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UBC Theses and Dissertations

Home parenteral nutrition in British Columbia Smith, Margaret Anne 1987

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HOME PARENTERAL NUTRITION IN BRITISH COLUMBIA By M. ANNE SMITH B . S c , The U n i v e r s i t y o f B r i t i s h Columbia, 1973 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN THE FACULTY OF GRADUATE STUDIES ( H e a l t h S e r v i c e s P l a n n i n g and A d m i n i s t r a t i o n ) We a c c e p t t h i s t h e s i s as conforming to the r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA September, 1987 (£) M. Anne Smith, 1987 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 DE-6(3/81) i i ABSTRACT P a r e n t e r a l n u t r i t i o n i s a t h e r a p y t h a t s u p p l i e s p a t i e n t s w i t h a l l t h e i r n u t r i t i o n a l r e q u i r e m e n t s i n t r a v e n o u s l y , thus e l i m i n a t i n g the need f o r o r a l a l i m e n t a t i o n . The t h e r a p y was f i r s t i n t r o d u c e d i n the U n i t e d S t a t e s t o h o s p i t a l i z e d p a t i e n t s i n the l a t e 1960's. The b e n e f i t o f l o n g - t e r m p a r e n t e r a l n u t r i t i o n was soon r e c o g n i z e d , and a program f o r ambulatory o r home p a r e n t e r a l n u t r i t i o n (HPN) was d e v e l o p e d . In B r i t i s h Columbia, t he f i r s t HPN p a t i e n t was begun on such t h e r a p y i n 1972. S i n c e t h e n , more than 50 B r i t i s h Columbians have r e c e i v e d HPN. In March 1986, t h e r e were 24 p a t i e n t s on the program. The average annual c o s t per p a t i e n t was $29,278 and the t o t a l 1986 o p e r a t i n g budget was $702,660, not i n c l u d i n g c o s t s f o r equipment o r h o s p i t a l t r a i n i n g . Up t o now, t h e r e has been no a n a l y t i c a l assessment o f the HPN program i n B.C. T h i s t h e s i s d e s c r i b e s the c u r r e n t home p a r e n t e r a l n u t r i t i o n s i t u a t i o n i n B.C. and makes recommendations f o r i t s improvement. I t l o o k s a t o v e r a l l c l i n i c a l outcomes ( b o t h p h y s i o l o g i c a l and p s y c h o s o c i a l ) , a t the r e s u l t s w i t h d i f f e r e n t subgroups of the p o p u l a t i o n , and a t the c o s t o f t h e HPN program i n B.C., and a l s o c o n s i d e r s t he p o t e n t i a l of t h i s t h e r a p y f o r c h i l d r e n . In C h a p t e r 2, the l i t e r a t u r e i s reviewed and o r g a n i z e d t o c o v e r a g e n e r a l d e s c r i p t i o n of HPN t h e r a p y , a summary o f the r e s u l t s o b t a i n e d from a number o f academic c e n t e r s , a review of HPN t h e r a p y i n c h i l d h o o d and the p s y c h o s o c i a l i s s u e s o f c o n c e r n t o HPN p a t i e n t s . C h a p t e r 3 p r o v i d e s a d e t a i l e d d e s c r i p t i o n o f the c u r r e n t HPN s i t u a t i o n i n B.C. i i i The study methodology i s d e s c r i b e d i n C h a p t e r 4 and the r e s u l t s i n C h a p t e r 5. The study i s a d e s c r i p t i v e a n a l y s i s . Due t o the l a c k o f any o bvious c o n t r o l group, a c o m p a r a t i v e e v a l u a t i o n per se was not p o s s i b l e . However, a S e a t t l e study by Robb, r e p o r t e d i n 1983, does a l l o w f o r some comparison. The main s o u r c e s o f d a t a were: 1. A P a t i e n t Q u e s t i o n n a i r e : The q u e s t i o n n a i r e was m o d e l l e d on t h a t used by the S e a t t l e group. 23 B.C. p a t i e n t s , e i t h e r on HPN a t the time o f q u e s t i o n -i n g , o r p r e v i o u s l y on the t h e r a p y , were s u r v e y e d . 19 (83%) responded. 2. A H e a l t h P r o f e s s i o n a l Q u e s t i o n n a i r e : T h i s q u e s t i o n n a i r e was c o m p i l e d e s p e c i a l l y f o r and s e n t t o a l l known h e a l t h c a r e workers i n B.C. i n the HPN f i e l d . 19 p r o f e s s i o n a l s , i n c l u d i n g p h y s i c i a n s , n u r s e s , p h a r m a c i s t s , d i e t i c i a n s , and a d m i n i s t r a t o r s , were s u r v e y e d . 17 responded f o r a r e s p o n s e r a t e o f 89%. The p a t i e n t survey p r o v i d e d b a s i c demographic i n f o r m a t i o n , a d e s c r i p t i o n o f HPN t h e r a p y r e c e i v e d , as w e l l as d a t a on c l i n i c a l outcomes, both p h y s i o l o g i c a l and p s y c h o s o c i a l . R e s u l t s showed t h a t p a t i e n t age, l e n g t h o f time on HPN, numbers o f hours p e r week devoted t o HPN, o c c u p a t i o n and p l a c e o f r e s i d e n c e were the most i m p o r t a n t v a r i a b l e s f o r p r e d i c t i n g p a t i e n t outcomes. Thus, p a t i e n t s t h a t were o l d e r , had been on HPN l e s s than one y e a r , o r s p e n t more than 80 hours per week p r e p a r i n g and a d m i n i s t e r i n g HPN s o l u t i o n s , had more p h y s i o l o g i c a l c o m p l a i n t s and showed i n t e r f e r e n c e w i t h more d a i l y a c t i v i t i e s and p e r s o n a l r e l a t i o n s h i p s . P a t i e n t s who were employed, r a t e d the HPN e x p e r i e n c e more p o s i -t i v e l y . O v e r a l l , p a t i e n t s found the HPN e x p e r i e n c e t o be a p o s i t i v e one, a l t h o u g h t h i s was not t r u e f o r a small group o f p a t i e n t s . Data a l s o i n d i c a t e d t h a t B.C. p a t i e n t s a c h i e v e d p h y s i o l o g i c a l r e s u l t s s i m i l a r t o the S e a t t l e group, and t o o t h e r c e n t e r s r e p o r t e d i n the l i t e r a t u r e , but appeared t o have more i v i n t e r f e r e n c e w i t h d a i l y a c t i v i t i e s and p e r s o n a l r e l a t i o n s h i p s than d i d p a t i e n t s from the S e a t t l e s t u d y . The h e a l t h p r o f e s s i o n a l survey i n d i c a t e d t h a t p r o f e s s i o n a l s c o n s i d e r e d t he c u r r e n t s i t u a t i o n i n B.C. t o be good w i t h r e s p e c t t o p a t i e n t t r a i n i n g and the c o m p l i c a t i o n r a t e a c h i e v e d . However, p a t i e n t f o l l o w - u p and the p s y c h o s o c i a l s u p p o r t p r o v i d e d t o p a t i e n t s were r a t e d o n l y f a i r t o poor. These h e a l t h c a r e p r o f e s s i o n a l s c i t e d problems w i t h the program's o r g a n i z a t i o n , t he need t o s t a n d a r d i z e s e r v i c e t o a l l p a t i e n t s , and the need t o p r o v i d e p a t i e n t s w i t h p r e -mixed s o l u t i o n s . In c o n c l u s i o n , some recommendations are made f o r improvement i n the B.C. HPN program. V TABLE OF CONTENTS PAGE ABSTRACT i i TABLE OF CONTENTS v LIST OF TABLES v i i i LIST OF FIGURES i x ACKNOWLEDGEMENT x CHAPTER 1: INTRODUCTION 1 The Study O b j e c t i v e s 3 The R esearch Q u e s t i o n 3 CHAPTER 2: DEVELOPMENT OF HOME PARENTERAL NUTRITION -LITERATURE REVIEW 4 PART 1: INTRODUCTION 4 I n d i c a t i o n s f o r HPN 5 V a s c u l a r A c c e s s . 8 N u t r i e n t S o l u t i o n s 11 Home P a r e n t e r a l N u t r i t i o n Programs 12 R e s u l t s o f Home P a r e n t e r a l N u t r i t i o n 15 PART 2: HOME PARENTERAL NUTRITION IN CHILDHOOD 19 PART 3: PSYCHOSOCIAL ISSUES 24 A d a p t a t i o n t o Home P a r e n t e r a l N u t r i t i o n 26 The P a r e n t e r a l N u t r i t i o n Apparatus 27 P s y c h o s o c i a l I s s u e s f o r the HPN P a t i e n t 28 A. Lack o f E a t i n g A b i l i t y 28 B. Body Image 29 C. A n x i e t y 30 D. E f f e c t on A c t i v i t i e s 30 E. The R o l e o f the H e a l t h Care P r o f e s s i o n a l 33 CHAPTER 3: THE BRITISH COLUMBIA HPN SITUATION 34 C o s t s o f HPN 36 T r a i n i n g and F o l l o w - u p 39 Vancouver General H o s p i t a l 39 S t . P a u l ' s H o s p i t a l 42 U n i v e r s i t y o f B r i t i s h Columbia H e a l t h S c i e n c e s C e n t r e H o s p i t a l 44 B.C. C h i l d r e n ' s H o s p i t a l 46 M i n i s t r y o f H e a l t h . 47 v i PAGE CHAPTER 4: THE THESIS METHODOLOGY 49 Data S o u r c e s 49 Method of Study 50 CHAPTER 5: RESULTS OF THE STUDY 52 PART 1: THE PATIENT QUESTIONNAIRE 52 R e s u l t s 52 A. P a t i e n t C h a r a c t e r i s t i c s 52 B. HPN Therapy 56 C. C l i n i c a l Data 58 D. P s y c h o s o c i a l E f f e c t s 63 Comparison w i t h t he S e a t t l e Study 73 A. The S e a t t l e Program 74 B. Comparison o f P a t i e n t P o p u l a t i o n s 75 C. Comparison o f R e s u l t s 76 F u r t h e r F i n d i n g s from t h e P a t i e n t Q u e s t i o n n a i r e 81 A. HPN's E f f e c t on P h y s i o l o g i c a l Symptoms 82 B. HPN's E f f e c t on P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e 87 C. HPN's E f f e c t on Body Image 93 D. HPN's E f f e c t on S e l f - C o n f i d e n c e 94 E. O v e r a l l R a t i n g o f HPN 95 F. C o n c l u d i n g Comment 96 PART 2: THE HEALTH PROFESSIONAL QUESTIONNAIRE 97 R e s u l t s 97 A. M e d i c a l C r i t e r i a f o r S u i t a b l e C a n d i d a t e s f o r HPN 98 B. The Home S i t u a t i o n f o r HPN P a t i e n t s 99 C. P a t i e n t C h a r a c t e r i s t i c s 99 D. HPN S e r v i c e 100 E. P a t i e n t S e l e c t i o n and T r a i n i n g 103 F. C u r r e n t S i t u a t i o n i n B.C 104 PART 3: CHART DATA 108 Vancouver General H o s p i t a l 108 B.C. C h i l d r e n ' s H o s p i t a l 109 C o n c l u d i n g Comments 110 v i i PAGE CHAPTER 6: DISCUSSION AND CONCLUSIONS I l l C l i n i c a l R e s u l t s 111 B.C.'s HPN Program 112 A. P a t i e n t S e l e c t i o n 112 B. T r a i n i n g 113 C. HPN S e r v i c e 113 D. Fo l l o w - u p 115 E. C o s t s and B e n e f i t s 117 F. O r g a n i z a t i o n 119 G. P s y c h o s o c i a l I s s u e s 122 Recommendations 125 BIBLIOGRAPHY 126 APPENDIX I - P a t i e n t HPN Q u e s t i o n n a i r e 133 APPENDIX II - H e a l t h P r o f e s s i o n a l Q u e s t i o n n a i r e 149 v i i i LIST OF TABLES T a b l e T i t l e Page 2- •1 Summary o f HPN R e s u l t s 18 3- •1 O p e r a t i n g C o s t o f HPN 1986 5- •1 P a t i e n t C h a r a c t e r i s t i c s and HPN Therapy 5- •2 P a t i e n t C h a r a c t e r i s t i c s 5- •3 C h a r a c t e r i s t i c s o f HPN Therapy 57 5- •4 C l i n i c a l Data 59 5- •5 Reason f o r C a t h e t e r Removal 59 5- •6 P h y s i o l o g i c a l C o m p l a i n t s 60 5- •7 Symptoms A s s o c i a t e d w i t h I n f u s i o n o f F a t E m u l s i o n 62 5-•8 I n t e r f e r e n c e w i t h A c t i v i t y 64 5-•9 P a t i e n t Employment S t a t u s Pre and P o s t HPN 67 5-•10 S o c i a l C h a r a c t e r i s t i c s o f HPN P a t i e n t s 69 5-•11 E f f e c t s o f HPN (B.C.) 72 5- •12 E f f e c t s o f HPN ( S e a t t l e ) 72 5-•13 F r e q u e n t D i a r r h e a vs F r e q u e n t P h y s i o l o g i c a l Symptoms 77 5-•14 F r e q u e n t D i a r r h e a vs P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e 79 5-•15 F r e q u e n t P h y s i o l o g i c a l Symptoms vs Age 82 5-•16 F r e q u e n t P h y s i o l o g i c a l Symptoms vs I d e a l Weight 83 5-•17 F r e q u e n t P h y s i o l o g i c a l Symptoms vs D i a g n o s i s 84 5-•18 F r e q u e n t P h y s i o l o g i c a l Symptoms vs Time on HPN 85 5-•19 F r e q u e n t P h y s i o l o g i c a l Symptoms vs Time R e q u i r e d f o r HPN 85 5-•20 F r e q u e n t P h y s i o l o g i c a l Symptoms vs Area o f R e s i d e n c e 86 5-•21 P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e vs Age 88 5-•22 P s y c h o s o c i a l I n t e r f e r e n c e Index Sco r e vs Time on HPN 89 5-•23 P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e vs Time R e q u i r e d f o r HPN 90 5-•24 P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e vs O c c u a p t i o n 91 5-•25 P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e vs HPN's E f f e c t on Body Image 91 5-•26 P s y c h o s o c i a l I n t e r f e r e n c e Index Sco r e vs HPN's E f f e c t on S e l f - C o n f i d e n c e 92 5-•27 P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e vs HPN's E f f e c t O v e r a l l 93 5-•28 HPN's E f f e c t on S e l f - C o n f i d e n c e vs Time on HPN 94 5-•29 HPN's E f f e c t on S e l f - C o n f i d e n c e vs O c c u p a t i o n 95 5-•30 HPN's E f f e c t O v e r a l l vs O c c u p a t i o n 96 5--31 F o l l o w - u p o f HPN O u t p a t i e n t s by H e a l t h P r o f e s s i o n a l s 101 5-•32 R a t i n g o f the C u r r e n t HPN S i t u a t i o n i n B.C. 104 5-•33 P a r e n t e r a l N u t r i t i o n a t C h i l d r e n ' s H o s p i t a l 1973-1985 109 i x LIST OF FIGURES F i g u r e T i t l e Page 2-1 The B r o v i a c C a t h e t e r 10 2- 2 I n s e r t i o n o f a C e n t r a l Venous C a t h e t e r 10 3- 1 P o l y t e t r a f l u o r e t h y l e n e (PTFE) G r a f t 41 X ACKNOWLEDGEMENT In order to complete a thesis on th is top ic , I needed help and co-operation from a large number of people. This I received in abundance. I would l i k e to express my sincere thanks to : - The HPN pat ients who so w i l l i n g l y provided me with information. - The health professionals in the f i e l d who gave me the i r time and the benef i t of the i r long-term experience with HPN in B.C. - To Elaine S to la r , one of my committee members. - To Nancy Waxier-Morrison who, throughout my program, provided enthusiasm and encouragement, and who opened my eyes to many new areas of study. - To John Mi l sum, chairman of my thes is committee, whose c lear mindedness, at tent ion to d e t a i l , and warm personal i ty made wr i t ing th is thesis such a worth-while experience. - 1 -CHAPTER 1: INTRODUCTION The a b i l i t y o f each human b e i n g t o m a i n t a i n an adequate n u t r i t i o n a l s t a t u s g i v e n s u f f i c i e n t q u a n t i t i e s o f f o o d i s something most o f us ta k e f o r g r a n t e d . Yet, f o r a very small p e r c e n t a g e o f the p o p u l a t i o n , t h i s i s not the c a s e . C e r t a i n i n d i v i d u a l s , because o f massive s u r g e r y o r s e v e r e bowel d i s e a s e t h a t i n t e r f e r e s w i t h f o o d a b s o r p t i o n , a re not a b l e t o m a i n t a i n adequate n u t r i t i o n from o r a l a l i m e n t a t i o n . F o r some p e o p l e , t h i s s i t u a t i o n i s o f s h o r t d u r a t i o n , f o r o t h e r s , i t has meant c h r o n i c m a l n u t r i t i o n o r death. In the l a t e 1960's, the i n t r o d u c t i o n o f a new form o f t h e r a p y , p a r e n t e r a l n u t r i t i o n , r e v o l u t i o n i z e d the p r o g n o s i s f o r t h e s e p e o p l e . Parenteral nutri t ion p r o v i d e s a means o f s u p p l y i n g p a t i e n t s w i t h a l l o f t h e i r n u t r i t i o n a l r e q u i r e m e n t s ; p r o t e i n , f a t , c a r b o h y d r a t e , e l e c t r o l y t e s and v i t a m i n s , i n t r a v e n o u s l y . T h i s t h e r a p y e n t i r e l y e l i m i n a t e d the need f o r o r a l a l i m e n t a t i o n . P a r e n t e r a l n u t r i t i o n was f i r s t i n t r o d u c e d i n the U n i t e d S t a t e s t o h o s p i t a l i z e d p a t i e n t s . Ambulatory o r home p a r e n t e r a l n u t r i t i o n soon f o l l o w e d when the p o t e n t i a l f o r l o n g term p a r e n t e r a l n u t r i t i o n was r e c o g n i z e d . In 1968, Dud r i c k s e n t the f i r s t p a t i e n t home t o be f e d e n t i r e l y by v e i n ( D u d r i c k , 1984). Home parenteral nutr i t ion (HPN) a l l o w e d p a t i e n t s t o r e t u r n home, and t o a d m i n i s t e r t h e i r own n u t r i t i o n a l s o l u t i o n s on a r e g u l a r b a s i s . F u r t h e r advances i n t e c h n o l o g y have a l l o w e d f o r much improvement to the system and f o r l o n g term p a r e n t e r a l n u t r i t i o n t o be p o s s i b l e and manageable f o r a l a r g e number o f p e o p l e . E s t i m a t e s i n d i c a t e t h a t i n 1984, more than 3,000 pe o p l e i n N o r t h America were - 2 -r e c e i v i n g HPN ( D u d r i c k , 1984). More r e c e n t r e p o r t s show t h a t 2000-5000 people a r e c u r r e n t l y r e c e i v i n g home p a r e n t e r a l n u t r i t i o n (Howard, 1986). In B r i t i s h C o l u m b i a , p a r e n t e r a l n u t r i t i o n o f h o s p i t a l i z e d p a t i e n t s had become w e l l e s t a b l i s h e d i n the mid 1970's, b u t a c c e p t a n c e o f home p a r e n t e r a l n u t r i t i o n was a l i t t l e s l o w e r . The f i r s t home p a t i e n t was begun i n B.C. i n 1972, but most were not s t a r t e d u n t i l the 1980's. To d a t e , a p p r o x i m a t e l y 50 p a t i e n t s have r e c e i v e d home p a r e n t e r a l n u t r i t i o n . D u r a t i o n o f t h e r a p y has ranged from a few months t o 14 y e a r s . C u r r e n t l y , t h e r e a r e 24 p a t i e n t s on HPN, r a n g i n g i n age from 16 t o 60 y e a r s and l i v i n g t h r o u g h o u t the p r o v i n c e . T h i s number c o n t i n u e s t o r i s e as more p h y s i c i a n s c o n s i d e r the t h e r a p y f o r t h e i r p a t i e n t s . In a d d i t i o n , home p a r e n t e r a l n u t r i t i o n f o r c h i l d r e n has been r e c o g n i z e d by p e d i a t r i t i o n s , the B.C. C h i l d r e n ' s H o s p i t a l , and t he B.C. M i n i s t r y o f H e a l t h , t o be a n e c e s s a r y form o f t h e r a p y . In 1986, B.C. C h i l d r e n ' s H o s p i t a l t r a i n e d and s e n t home i t s f i r s t f o u r teenage HPN p a t i e n t s . I t i s e v i d e n t t h a t t h e need f o r HPN i n the p r o v i n c e i s expanding both f o r a d u l t s and c h i l d r e n . Up t o now, t h e r e has been no a n a l y t i c a l assessment o f the home p a r e n t e r a l n u t r i t i o n s i t u a t i o n i n B.C. Thus, i t appeared t h a t s u b s t a n t i a l v a l u e c o u l d be g a i n e d by i n v e s t i g a t i n g t he e x i s t i n g home p a r e n t e r a l n u t r i t i o n program f o r a d u l t s and o l d e r c h i l d r e n as w e l l as the p o s s i b i l i t y f o r p o t e n t i a l use i n younger c h i l d r e n . - 3 -THE STUDY OBJECTIVES The study o b j e c t i v e s a r e : 1. To d e s c r i b e t he c u r r e n t home p a r e n t e r a l n u t r i t i o n s i t u a t i o n i n B.C. 2. To make recommendations t o improve t he c u r r e n t program i n B.C. f o r a d u l t s and f o r c h i l d r e n . THE RESEARCH QUESTIONS The r e s e a r c h q u e s t i o n s posed by t h i s t h e s i s a r e : What a r e the o v e r a l l c l i n i c a l outcomes f o r p a t i e n t s who have r e c e i v e d home p a r e n t e r a l n u t r i t i o n i n B.C.? What a r e the r e s u l t s f o r d i f f e r e n t sub-groups o f the p o p u l a t i o n ? What in d e p e n d e n t v a r i a b l e s a r e u s e f u l i n p r e d i c t i n g outcome? What a r e the c o s t s o f home p a r e n t e r a l n u t r i t i o n ? What p s y c h o s o c i a l problems r e l a t e d t o home p a r e n t e r a l n u t r i t i o n have been e x p e r i e n c e d by B.C. p a t i e n t s ? Are t h e r e sub-groups o f c h i l d r e n who c o u l d be p o t e n t i a l c a n d i d a t e s f o r home p a r e n t e r a l n u t r i t i o n t h e r a p y i n B.C.? 1. 2. 3. 4. 5 . - 4 -CHAPTER 2: DEVELOPMENT OF HOME PARENTERAL NUTRITION - LITERATURE REVIEW PART 1: INTRODUCTION As i t s name s u g g e s t s , t o t a l p a r e n t e r a l n u t r i t i o n i s a method o f p r o v i d i n g s u f f i c i e n t n u t r i e n t s i n t r a v e n o u s l y t o s u s t a i n l i f e i n d e f i n i t e l y . S i m p l i s t i c -a l l y p ut, home p a r e n t e r a l n u t r i t i o n h a s f o u r r e q u i r e m e n t s : 1. A ccess t o the v a s c u l a r system. 2. P r o v i s i o n o f s u i t a b l e n u t r i t i o n i n c l u d i n g p r o t e i n , c a r b o h y d r a t e , f a t , e l e c t r o l y t e s , v i t a m i n s and m i n e r a l s , to the p a t i e n t i n a p p r o p r i a t e amounts. 3. A method o f t r a i n i n g p a t i e n t s t o a d m i n i s t e r the n u t r i t i o n s a f e l y and e f f i c i e n t l y . 4. A system f o r d e l i v e r y o f t h i s l a r g e q u a n t i t y o f s o l u t i o n s and s u p p l i e s t o the p a t i e n t ' s home. An e x p l a n a t i o n o f how the above r e q u i r e m e n t s o f HPN ar e met w i l l f o l l o w . I t i s a s i t u a t i o n which has been d e v e l o p e d o v e r time through e x p e r i e n c e w i t h a new t h e r a p e u t i c m o d a l i t y t h a t has been m o d i f i e d and r e f i n e d t o b e t t e r meet p a t i e n t ' s needs. The l e a d e r s h i p i n the f i e l d has come from a number o f groups, n o t a b l y , D u d r i c k i n Texas, J e e j e e b h o y i n T o r o n t o , S c r i b n e r i n S e a t t l e , and S t e i g e r i n C l e v e l a n d ( D u d r i c k , 1984; J e e j e e b h o y , 1976; S c r i b n e r , 1970; S t e i g e r , 1983). - 5 -Indicat ions for HPN In the past, many patients with gast ro in test ina l diseases developed chronic malnutr i t ion to the point that they were unable to work or enjoy soc ia l a c t i v i t i e s . Some were confined to hospital and some died as a resu l t (Jeejeebhoy, 1980). Parenteral nu t r i t i on has revolut ionized the outcome for these pat ients . From the experience f i r s t gained in hosp i ta l i zed pat ients , i t became evident that many people could benef i t from receiv ing parenteral nu t r i t ion for a short period of time and a much smaller group would require parenteral nu t r i t ion for a long period of time, including some inde f in i te l y (Ste iger , 1981). I t i s th is l a t t e r group who are potent ial candidates for home parenteral nu t r i t i on . Before considering any pat ient for HPN, i t must be c lear that nu t r i t iona l support i s needed, that the parenteral route i s the preferred way to provide the nutr ients and that the home environment i s preferable to others such as the hosp i ta l . Experience has shown that the fol lowing medical s i tuat ions may be i n d i c a t i o n s f o r HPN (Jeejeebhoy, 1983). a) Total j e j uno - i l ea l resect ion, so that oral nu t r i t i on i s impossible. b) Massive small bowel resect ion or short bowel syndrome resu l t ing in malabsorption of nutr ients and inadequate nu t r i t i on . In some cases, HPN can be used unt i l the remaining bowel has healed and i s able to adapt to oral nu t r i t i on . When th is occurs HPN i s stopped. If more than 70% of the small bowel i s l o s t , pers istent malabsorption w i l l usual ly require l i f e l o n g HPN to maintain qual i ty of l i f e and survival (Dudrick, 1984). - 6 -c) Chronic bowel obstruct ion not amenable to surgical a l l e v i a t i on where eating causes pain and vomiting. This may occur with Crohn's d isease, scleroderma and pseudo obstruct ion syndrome. d) End jejunostomy syndrome, where pat ients have l os t those areas of small and large bowel where in tes t ina l contents are concen-t ra ted, resu l t ing in copious loss of iso ton ic bowel contents af ter eat ing. Pat ients absorb nutr ients but suf fer severe f l u i d and e lec t ro l y te de f i c i enc ies . e) Growth re tardat ion, espec ia l l y as a consequence of Crohn's disease in adolescents. Cessation of growth and maturation due to poor intake of ca lo r ies can be reversed with the use of both oral and parenteral nu t r i t i ona l support. Two other s i tuat ions are more con t rovers ia l : f) Bowel rest (use of parenteral nu t r i t i on to avoid oral intake) has been shown e f fec t ive in improving symptoms of a number of gas t ro - in tes t ina l diseases inc luding panc rea t i t i s , bowel f i s t u l a s , res is tan t sprue and espec ia l l y Crohn's disease. The theory i s that d iver t ing the luminal stream from the inflamed bowel allows healing to occur. However, whether long term HPN i s ind icated, - 7 -or whether s h o r t e r p e r i o d s o f p a r e n t e r a l n u t r i t i o n i n h o s p i t a l i s more a p p r o p r i a t e i s q u e s t i o n a b l e ( J e e j e e b h o y , 1980). g) A d j u n c t t o c a n c e r t h e r a p y . Cancer i s a s s o c i a t e d w i t h weight l o s s , and w e i g h t l o s s i s a s s o c i a t e d w i t h poor p r o g n o s i s . However, the r o l e o f n u t r i t i o n a l s u p p o r t i n c a n c e r c a c h e x i a i s n ot c l e a r . Some s o u r c e s r e p o r t t h a t use o f HPN has d e c r e a s e d the m a n i f e s t a t i o n s o f a l i m e n t a r y t r a c t t o x i c i t y and a l l o w e d f o r an i n c r e a s e i n dose o f c h e m o t h e r a p e u t i c drugs ( D u d r i c k , 1984). Others have r e p o r t e d HPN u s e f u l i n p a t i e n t s w i t h r e c u r r e n t c a n c e r who a r e unable t o ta k e adequate f l u i d s and n u t r i e n t s o r a l l y and t h u s , unable t o l e a v e h o s p i t a l . In t h i s group, HPN i s i n d i c a t e d not t o p r o l o n g s u r v i v a l but r a t h e r t o improve the q u a l i t y o f s u r v i v a l (Weiss, 1982). In any c a s e , r e c e n t r e p o r t s from t he N a t i o n a l R e g i s t r y New York Academy, the 01 ey F o u n d a t i o n and from commercial r e g i s t r i e s , a l l g a t h e r i n g i n f o r m a t i o n on p a t i e n t s r e c e i v i n g HPN, i n d i c a t e t h a t m a l i g n a n c y i s the most common d i a g n o s t i c c a t e g o r y f o r c u r r e n t HPN p a t i e n t s . T h i s i s a s i g n i f i c a n t change from 1977 when the N a t i o n a l R e g i s t r y r e p o r t e d t h a t o n l y 17% o f home p a t i e n t s were a c c o u n t e d f o r by mali g n a n c y (Howard, 1986). The c l i n i c a l c o n d i t i o n s t h a t most commonly l e a d t o the above s i t u a t i o n s i n c l u d e Crohn's d i s e a s e , r a d i a t i o n e n t e r i t i s , and m e s e n t e r i c i n f a r c t i o n . - 8 -V a s c u l a r Access When home p a r e n t e r a l n u t r i t i o n was f i r s t begun, a c c e s s t o the c i r c u l a t i o n was v i a an a r t e r i o v e n o u s (AV) shunt s i m i l a r t o ones used f o r maintenance hemo-d i a l y s i s . The p r i n c i p l e was t h a t t h e i r r i t a t i n g , s c l e r o s i n g , n u t r i e n t s o l u t i o n c o u l d be i n t r o d u c e d i n t o t h e blood stream so t h a t d i l u t i o n c o u l d t a k e p l a c e at a p o i n t where t h e v e s s e l w a l l i s a r t i f i c i a l ( S c r i b n e r , 1976). T h i s system became known as t h e " a r t i f i c i a l g u t " . The program f a i l e d however, due t o t h e f a c t t h a t p a t i e n t s o f t e n had poor v e i n s and t h e normal c l o t t i n g mechanisms made i t i m p o s s i b l e t o m a i n t a i n t h e shunts ( R i e l l a , 1976). A l s o , t h e r e were f r e q u e n t c o m p l i c a t i o n s such as t h r o m b o s i s and i n f e c t i o n secondary t o t h e h y p e r t o n i c d e x t r o s e s o l u t i o n s ( L e e s , 1981). S u b s e q u e n t l y i n 1973, s i l i c o n e r u b b e r c a t h e t e r s , w i t h t i p s p l a c e d i n t h e r i g h t a u r i c l e and e x i t s i t e s at t h e end o f a l o n g subcutaneous t u n n e l down t h e f r o n t o f t h e c h e s t , were used and found s u c c e s s f u l ( R i e l l a , 1976). The e x t r a -v a s c u l a r p a r t o f t h e c a t h e t e r was a t t a c h e d t o a Dacron c u f f which s t i m u l a t e d growth o f f i b r o u s t i s s u e . In two t o t h r e e weeks, ingrowth o f t h e f i b r o u s t i s s u e i n t o t h e c u f f anchored t h e c a t h e t e r , p r e v e n t i n g d i s l o d g e m e n t and c l o s i n g t he p o t e n t i a l s i n u s t r a c t between t h e e x i t s i t e and the c a n n u l a t e d v e i n ( I v e y , 1975). The e x t e r i o r p a r t o f the c a t h e t e r was f i t t e d w i t h a cap t h a t a l s o s e r v e d as a h e p a r i n w e l l t o a l l o w i n t e r m i t t e n t i n f u s i o n o f the n u t r i e n t s o l u t i o n . The r i g h t a t r i a l c a t h e t e r was i n i t i a l l y i n t r o d u c e d u s i n g s u b c l a v i a n venous c a t h e t e r i z a t i o n but was c o m p l i c a t e d by such problems as pneumothorax, hemotho-rax, and s u b c l a v i a n a r t e r y p u n c t u r e ( R i e l l a , 1976). - 9 -L a t e r , i n 1973, Broviac i n t r o d u c e d a Dacron c u f f e d s i l i c o n e rubber c a t h e t e r ( F i g u r e 2-1). T h i s c a t h e t e r has s i n c e become w i d e l y used. I t i s i n s e r t e d under g e n e r a l o r l o c a l a n a e s t h e t i c w i t h f l u o r o s c o p i c c o n t r o l , by venous cutdown p l a c i n g the t i p a t the j u n c t i o n o f the s u p e r i o r vena cava and the r i g h t a t r i u m . The e x t r a v a s c u l a r p o r t i o n i s b r o u g h t out through a subcutaneous t u n n e l on the a n t e r i o r c h e s t w a l l , e x i t i n g a t the p a r a s t e r n a l b o r d e r below the l e v e l o f the x i p h o i d . The e x i t s i t e i s chosen p r e - o p e r a t i v e l y so the p a t i e n t can e a s i l y see the c a t h e t e r and c a r e f o r i t p r o p e r l y ( L e e s , 1981) ( F i g u r e 2-2). In 1978, t h e Hickman c a t h e t e r was i n t r o d u c e d . I t s c o n s t r u c t i o n , d u r a b i l i t y and d e p e n d a b i l i t y makes i t the most p o p u l a r c a t h e t e r used today ( D u d r i c k , 1984). I t has a l a r g e r i n n e r d i a m e t e r than the B r o v i a c c a t h e t e r , which r e s u l t s i n a lower i n c i d e n c e o f c a t h e t e r o c c l u s i o n secondary t o c l o t f o r m a t i o n w i t h i n the lumen ( D u d r i c k , 1984). In 1981, the p r o c e d u r e o f c e n t r a l venous c a t h e t e r i z a t i o n was a g a i n improved. I n s t e a d o f u s i n g a venous cutdown t e c h n i q u e , i t was shown t h a t c a t h e t e r s c o u l d be i n s e r t e d u s i n g p e r c u t a n e o u s i n t r o d u c e r s , o r i g i n a l l y d e s i g n e d f o r the placement o f c a r d i a c pacemaker l e a d s . T h i s has g r e a t l y improved the s a f e t y and e f f i c a c y o f c e n t r a l venous c a t h e t e r placement. Placement c o n t i n u e s t o be done i n the o p e r a t i n g room under a n a e s t h e t i c and u s i n g f l u r o s c o p y t o v e r i f y the a c c u r a t e placement o f the c a t h e t e r t i p . - 10 -F i g u r e 2 - 1 . The B r o v i a c C a t h e t e r R e f e r e n c e - VGH TPN N u r s i n g M a n u a l , 1983 . F i g u r e 2 - 2 . I n s e r t i o n o f a C e n t r a l V e i n C a t h e t e r (A) (B) (C) S k e t c h t o show i n s e r t i o n s i t e f o r permanent v a s c u l a r a c c e s s by c e n t r a l v e i n c a t h e t e r . These may be on r i g h t o r l e f t s i d e o f t o r s o b u t a r e shown o n l y f o r t h e l e f t s i d e . The s i t e s a r e f o r r e a c h i n g t h e v e n a c a v a v i a (A) s u b c l a v i a n (B) i n t e r n a l j u g u l a r , o r (C) e x t e r n a l i l i a c v e i n . ( J e e j e e b h o y 1 9 8 3 ) . - 11 -N u t r i e n t S o l u t i o n s The nutrient solutions p r o v i d e t o t a l r e q u i r e m e n t s n e c e s s a r y t o s u s t a i n l i f e , t o a l l o w f o r normal a c t i v i t y and t o promote growth i n c h i l d r e n and a d o l e s c e n t s . Most a d u l t p a t i e n t s r e q u i r e 1500-2200 K c a l . per day i n 1500-2200 ml. o f s o l u t i o n s . F l u i d r e q u i r e m e n t s , however, may be i n c r e a s e d s i g n i f i c a n t l y i f f l u i d i s l o s t t h r o u g h stomas o r f i s t u l a s ( L e e s , 1981). S o l u t i o n s are i n d i v i d u a l l y p r e s c r i b e d t o meet needs f o r c a l o r i e s , p r o t e i n , e l e c t r o l y t e s , v i t a m i n s and t r a c e e l e m e n t s . The s o l u t i o n s used f o r HPN a r e i d e n t i c a l t o t h o s e used i n the h o s p i t a l . C a l o r i e s o u r c e s a r e h i g h l y c o n c e n t r a t e d g l u c o s e s o l u t i o n s and f a t e m u l s i o n s . P r o t e i n i s a v a i l a b l e as s o l u t i o n s o f p r o t e i n h y d r o l y s a t e o r c r y s t a l l i n e amino a c i d s . E l e c t r o l y t e s , v i t a m i n and t r a c e elements are added t o the g l u c o s e s o l u t i o n s and s u b s e q u e n t l y mixed w i t h the p r o t e i n s o l u t i o n s . F a t e m u l s i o n s cannot be mixed and are run i n t r a v e n o u s l y s e p a r a t e l y . Methods o f i n t r a v e n o u s d e l i v e r y o f t h e s e s o l u t i o n s t o the p a t i e n t v a r y . In the h o s p i t a l , i t i s g e n e r a l l y a 24-hour c o n t i n u o u s i n f u s i o n . P r e - d i s c h a r g e , however, t h e i n f u s i o n r a t e i s i n c r e a s e d t o a l l o w f o r an i n t e r m i t t e n t i n f u s i o n o f 8-12 hours per day. One e x c e p t i o n t o t h i s i s seen a t the c l i n i c run by D u d r i c k ( D u d r i c k , 1984). In 1976, t h e i r n u t r i t i o n s u p p o r t s e r v i c e produced a p o r t a b l e v e s t i n f u s i o n system. U s i n g t h i s s e t u p , 24-hour c o n t i n u o u s i n f u s i o n has been c o n t i n u e d i n a small group o f HPN p a t i e n t s who c annot o r w i l l n o t t o l e r a t e o r adapt to a s c h e d u l e o f i n t e r m i t t e n t f e e d i n g . T h i s system p r o v i d e s a l i g h t w e i g h t v e s t w i t h p o c k e t s o v e r each b r e a s t , f l a n k , o r s h o u l d e r s u f f i c i e n t t o h o l d - 12 -a 50-1000 ml. p l a s t i c bag o f n u t r i e n t s o l u t i o n . The s o l u t i o n bags are c o n n e c t e d t o a m i n i a t u r e i n f u s i o n pump t h a t i s s i t u a t e d i n a small p o c k e t i n the v e s t . Power su p p l y t o the pump i s p r o v i d e d by two r e c h a r g e a b l e b a t t e r i e s . As an a l t e r n a t i v e t o the v e s t , p u r s e s , a t t a c h e c a s e s and o t h e r t o t e bags have a l s o been adapted t o h o l d n u t r i e n t s o l u t i o n s . Most p a t i e n t s , however, p r e f e r and t o l e r a t e a regimen o f i n t e r m i t t e n t f e e d i n g o v e r 8-12 h o u r s , u s u a l l y a t n i g h t , a l l o w i n g f o r normal a c t i v i t y d u r i n g the day. S o l u t i o n s a r e run e i t h e r by g r a v i t y ( L a d e f o g e d , 1978), v i a an i n t r a -venous i n f u s i o n pump ( I v e y , 1975; F l e m i n g , 1977) o r l e s s commonly, u s i n g a pneumatic p r e s s u r e system ( J e e j e e b h o y , 1976). Home P a r e n t e r a l N u t r i t i o n Programs In a l l c a s e s r e p o r t e d i n the l i t e r a t u r e , home p a r e n t e r a l n u t r i t i o n p a t i e n t s are s e l e c t e d and t r a i n e d i n h o s p i t a l t o manage t h e i r t h e r a p y . Here t h e r e i s u s u a l l y a team of professionals i n c l u d i n g d o c t o r s , n u r s e s , p h a r m a c i s t s , d i e t i c i a n s , and s o c i a l workers who p r o v i d e f o r the needs o f t h e s e p a t i e n t s . In each i n s t i t u t i o n , t h e r o l e o f t h e p r o f e s s i o n a l s and the group mix v a r i e s . One o f the e a r l i e s t HPN programs was e s t a b l i s h e d i n New York by S h i 1s a t Cornell University ( S h i l s , 1975). A 1975 r e p o r t o f t h e i r f i r s t e x p e r i e n c e s t r e s s e d the importance o f t h e team t o s e l e c t a p p r o p r i a t e p a t i e n t s f o r the HPN program. The team's c r i t e r i a f o r s e l e c t i o n was based on the f o l l o w i n g : 1. A r e l a t i v e l y s t a b l e c l i n i c a l s t a t e w i t h e x p e c t a t i o n s o f a r e a s o n a b l y c o m f o r t a b l e , home l i f e f o r many months. 2. A s u i t a b l e home environment w i t h s u p p o r t i v e f a m i l y members or o t h e r i n d i v i d u a l s , one o r more o f whom i s c o n v e r s a n t w i t h a l l a s p e c t s o f the HPN t e c h n i q u e . - 13 -3. The a v a i l a b i l i t y o f a t r a i n e d v i s i t i n g nurse t o p e r i o d i c a l l y v i s i t the home. 4. When the p a t i e n t l i v e s some d i s t a n c e from the h o s p i t a l , t he c o - o p e r a t i o n o f a p h y s i c i a n i n the town o f r e s i d e n c e t o assume r e s p o n s i b i l i t y f o r m e d i c a l c a r e ( S h i l s , 1975). The importance o f a r e h a b i l i t a t i o n program p o s t - d i s c h a r g e was a l s o s t r e s s e d . T h i s program was t o have as i t s minimum goal,- t h e e s t a b l i s h m e n t o f an a c t i v e l i f e a t home f o r each HPN p a t i e n t , i n c l u d i n g the resumption o f employment i f deemed m e d i c a l l y s u i t a b l e . Another f e a t u r e o f the r e h a b i l i t a t i o n program was the a v o i d a n c e o f e x c e s s i v e dependence by p a t i e n t s on the f a m i l y o r v i s i t i n g n u r s e . At t he University of Texas Health Sciences Center, p a t i e n t s and t h e i r f a m i l i e s a r e a s s e s s e d and s e l e c t e d f o r HPN by the n u t r i t i o n s u p p o r t team ( D u d r i c k , 1984). P a t i e n t s a r e chosen based on medical c r i t e r i a and on t h e i r m o t i v a t i o n , l e a r n i n g a b i l i t y , manual d e x t e r i t y and o t h e r f a c t o r s t h a t c o u l d p o s s i b l y a f f e c t the f e a s i b i l i t y , s a f e t y and e f f i c a c y o f t h e r a p y . P a t i e n t t r a i n i n g i n c l u d e s c a l i b r a t i o n o f s y r i n g e s f o r a c c u r a t e measurement, a s e p t i c p r e p a r a t i o n o f s o l u t i o n s , c a r e o f the c a t h e t e r , a s e p t i c use and maintenance o f i n t r a v e n o u s t u b i n g and the use o f an i n t r a v e n o u s pump. A f t e r d i s c h a r g e , one member o f the n u t r i t i o n s u p p o r t team i s a v a i l a b l e 24 hours a day f o r emergency s i t u a t i o n s . P a t i e n t s a r e a l s o seen r e g u l a r l y (once per week t o once every s i x months) a t a s p e c i a l l y e q u i p p e d c l i n i c . V i s i t i n g n u rses make home v i s i t s as o f t e n as n e c e s s a r y f o r f o l l o w - u p t e a c h i n g and documentation o f t h e p a t i e n t ' s p r o g r e s s . O t h e r team members are i n c o n t a c t by t e l e p h o n e on a r e g u l a r b a s i s . - 14 -At the University Hospital in Seattle, p a t i e n t t r a i n i n g i s done by two p h y s i c i a n s and a p h a r m a c i s t and r e q u i r e s ten t o f o u r t e e n days to complete. T r a i n i n g i s s i m i l a r t o t h a t d e s c r i b e d above. P a t i e n t s a r e p r o v i d e d w i t h w r i t t e n i n s t r u c t i o n s i n t h e form o f a manual l a i d o u t i n a s t e p - b y - s t e p manner ( I v e y , 1975). P a t i e n t s from the Toronto General Hospital, u n l i k e the o t h e r i n s t i t u t i o n s mentioned a r e not r e q u i r e d t o make t h e i r own s o l u t i o n s ; i n s t e a d , p r e p a r a t i o n s o f a l l p a r e n t e r a l n u t r i t i o n s o l u t i o n s i s done c e n t r a l l y by the h o s p i t a l pharmacy ( J e e j e e b h o y , 1976; J e e j e e b h o y , 1980). The b e n e f i t of t h i s system i n c l u d e s r e d u c t i o n o f p a t i e n t time needed t o p r e p a r e HPN s o l u t i o n s and b e n e f i t s t o p a t i e n t s l i v i n g i n s i t u a t i o n s w i t h l i m i t e d s pace. As w e l l , m o d i f i -c a t i o n s o f s o l u t i o n c o m p o s i t i o n can be a c h i e v e d w i t h o u t p a t i e n t r e - e d u c a t i o n and, most i m p o r t a n t l y , q u a l i t y c o n t r o l i s f e a s i b l e . P a t i e n t s a r e , however, r e q u i r e d t o p i c k up monthly s u p p l i e s a t the pharmacy. T r a i n i n g i n o t h e r r e s p e c t s i s s i m i l a r t o the o t h e r groups, a l t h o u g h a back-up p e r s o n , such as a spouse o r c l o s e r e l a t i v e , i s u s u a l l y t r a i n e d a t the same t i m e . Arrangements a r e made f o r home c a r e i n the i n i t i a l p e r i o d a f t e r d i s c h a r g e so p a t i e n t s can be h e l p e d w i t h d i f f i c u l t i e s t h a t a r i s e a t home. At the Mayo Cl i n i c , r e p o r t s i n d i c a t e t h a t a p s y c h i a t r i s t i s a l s o a member o f the m u l t i d i s c i p l i n a r y HPN team and i s r e s p o n s i b l e f o r i n t e r v i e w i n g each c a n d i d a t e f o r p o s s i b l e HPN t h e r a p y ( F l e m i n g , 1977). The Cleveland C l i n i c , l i k e w i s e , have i n c l u d e d a p s y c h i a t r i s t on t h e i r team ( S t e i g e r , 1983). T h i s p e r s o n ' s assessment o f p a t i e n t s i n c l u d e s memory f u n c t i o n , a b i l i t y t o comprehend i n f o r m a t i o n , b a s i c knowledge, judgement a b i l i t y , - 15 -a t t e n t i o n span, p r e s e n c e o r absence o f a n x i e t y o r d e p r e s s i o n and i n f l u e n c e o f drugs on t h i n k i n g o r b e h a v i o u r . The c l i n i c s t r e s s e s the importance o f r e g u l a r f o l l o w - u p and m o n i t o r i n g o f p a t i e n t s a f t e r d i s c h a r g e t o m i n i m i z e c o m p l i c a t i o n s . I n i t i a l l y , f o l l o w - u p v i s i t s t o the c l i n i c a r e weekly and l a t e r d e c r e a s e d t o monthly. T h i s group o f p a t i e n t s has t h e i r n u t r i e n t s o l u t i o n s s u p p l i e d by a p r i v a t e company. R e s u l t s o f Home P a r e n t e r a l N u t r i t i o n R e s u l t s r e p o r t e d from t h e s e w e l 1 - o r g a n i z e d programs have, i n g e n e r a l , been ver y good. P a t i e n t s have been n u t r i t i o n a l l y s u s t a i n e d f o r l o n g p e r i o d s o f time s o l e l y w i t h n u t r i t i o n from i n t r a v e n o u s s o u r c e s . F u r t h e r r e p o r t s i n d i c a t e t h a t most HPN p a t i e n t s can resume a moderate degree o f normal a c t i v i t i e s and l i v e l i v e s o f r e a s o n a b l e q u a l i t y . The most common problems have been a s s o c i a t e d w i t h the c a t h e t e r , e s p e c i a l l y b l o c k a g e and i n f e c t i o n . I n f e c t i o n o f the s u p e r f i c i a l c a t h e t e r d i s t a l t o the Dacron c u f f i s most common and u s u a l l y responds t o r i g o r o u s l o c a l t r e a t m e n t . C a t h e t e r r e l a t e d s e p t i c e m i a i s much more s e r i o u s but o c c u r s l e s s f r e q u e n t l y ( K o i t h a n , 1985). A r e t r o s p e c t i v e s t u d y o f 43 p a t i e n t s aged 12-69 y e a r s who r e c e i v e d HPN f o r 4-113 months, w i t h an average o f 30 months and a combined t o t a l e x p e r i e n c e o f 153 y e a r s , examined the i n c i d e n c e o f catheter septicemia (Rannen, 1986). E i g h t y - t w o e p i s o d e s o f c a t h e t e r s e p t i c e m i a were r e p o r t e d c o r r e s p o n d i n g to one e p i s o d e per 1.9 y e a r s . A n a l y s i s o f t h e s e r e s u l t s showed a lower i n c i d e n c e o f e p i s o d e s w i t h the newer B r o v i a c c a t h e t e r than w i t h the s u b c l a v i a n c a t h e t e r s . C a t h e t e r placement i n the c h e s t showed l e s s problems than t h o s e i n the t h i g h . - 16 -Treatment o f i n f e c t i o n s v a r i e d . F o r t y - n i n e c a s e s were t r e a t e d w i t h a n t i b i o t i c s and c a t h e t e r change, 26 c a s e s w i t h a n t i b i o t i c s a l o n e , and 5 c a s e s w i t h c a t h e t e r changes a l o n e . The r e l a p s e r a t e o f c a t h e t e r s e p t i c e m i a d i d not d i f f e r between the t r e a t m e n t groups. Nor was any c o r r e l a t i o n found between s e p t i c e m i a i n c i d e n c e and c a t h e t e r l i f e t i m e . However, m e t i c u l o u s a s e p t i c c a t h e t e r c a r e and i n f u s i o n t e c h n i q u e were c o n s i d e r e d the most i m p o r t a n t p r o p h y l a c t i c measures t o pr e v e n t c a t h e t e r s e p t i c e m i a . C l i n i c a l l y i m p o r t a n t metabolic complications o c c u r r a r e l y . However, c o m p l i c a t i o n s can a r i s e due t o d e f i c i e n c y o r ex c e s s o f any n u t r i e n t such as g l u c o s e , f a t t y a c i d s , amino a c i d s , e l e c t r o l y t e s o r v i t a m i n s . As w e l l , l i v e r d i s e a s e i n c l u d i n g f a t t y i n f i l t r a t i o n and i n t e r h e p a t i c c h o l e s t a s i s are commonly r e p o r t e d . The cau s e s o f t h e s e problems a r e not w e l l e s t a b l i s h e d but l i k e l y r e s u l t from a c o m b i n a t i o n o f the p a r e n t e r a l n u t r i t i o n , the a c u t e i l l n e s s and s u r g e r y ( L a d e f o g e d , 1985). In c h i l d r e n , l i v e r d i s e a s e may be a more s i g n i f i c a n t problem. Wolfe s u g g e s t e d t h a t l i v e r d i s e a s e a s s o c i a t e d w i t h p a r e n t e r a l n u t r i t i o n may p o t e n t i a l l y l i m i t the c a p a c i t y t o p r o v i d e p r o l o n g e d p a r e n t e r a l n u t r i t i o n t o i n f a n t s and c h i l d r e n (Wolfe, 1983). The C l e v e l a n d C l i n i c r e p o r t e d on 22 p a t i e n t s d i s c h a r g e d from J a n u a r y 1976 to August 1977 ( G u n d f e s t , 1979). Average c a t h e t e r l i f e was 6 months with t h e l o n g e s t m a i n t a i n e d c a t h e t e r a t 19 months. Reasons f o r c a t h e t e r removal i n c l u d e d o b s t r u c t i o n , s e p s i s , breakage and s l i p p a g e . I n f e c t i o n s were a l l r e s o l v e d by removal o f the c a t h e t e r and a c o u r s e o f a n t i b i o t i c s . R e s u l t s from 50 more p a t i e n t s d i s c h a r g e d from 1976-1981 showed an average h o s p i t a l i z a t i o n r a t e o f 13% o f t o t a l time on HPN ( S t e i g e r , 1983). T h i s h o s p i t a l i z a t i o n was due p r i m a r i l y t o the primary d i s e a s e p r o c e s s and t o s e p s i s . Two o f 13 deaths r e p o r t e d d u r i n g - 17 -t h i s time were r e l a t e d t o HPN. One p a t i e n t , a n a r c o t i c a d d i c t , f a i l e d t o p r o p e r l y f o l l o w a s e p t i c t e c h n i q u e and d i e d as a r e s u l t o f s e p s i s . Another p a t i e n t d i e d from h y p e r g l y c e m i a as a r e s u l t o f a pharmacy e r r o r i n s o l u t i o n p r e p a r a t i o n . The r e s u l t s from U n i v e r s i t y H o s p i t a l , S e a t t l e , showed 40 p a t i e n t s had been m a i n t a i n e d from 3 months t o 4 y e a r s on HPN ( I v e y , 1975). C o m p l i c a t i o n s i n t h i s group i n c l u d e d s e p t i c e m i a , e l e c t r o l y t e i m b a l a n c e , c a t h e t e r o b s t r u c t i o n , l e a k a g e and m a l p o s i t i o n . S e v e n t y - e i g h t c a t h e t e r s were i n s e r t e d i n t h e s e p a t i e n t s w i t h an average c a t h e t e r l i f e o f 9.4 months (range 1-36 months). S i n c e 1973, however, a marked d e c r e a s e i n c a t h e t e r o b s t r u c t i o n was o b s e r v e d due t o an improved t e c h n i q u e f o r p l a c i n g t he h e p a r i n l o c k . S e p t i c e m i a was r e p o r t e d as one i n c i d e n c e p er 5.5 p a t i e n t c a t h e t e r y e a r s ( R i e l l a , 1976). More r e c e n t r e p o r t s from t h i s group show a c a t h e t e r l i f e o f 22 months w i t h i n f e c t i o n b e i n g t he most common reason f o r removal (Robb, 1983). Du d r i c k r e p o r t e d on t h e r e s u l t s o f 133 p a t i e n t s d i s c h a r g e d from May 1974 t o November 1983 ( D u d r i c k , 1984). These p a t i e n t s , who were aged 6 months t o 78 y e a r s , a c c o u n t e d f o r more than 100 p a t i e n t y e a r s o f HPN. I n c l u d e d i n t h i s group was one c h i l d who was m a i n t a i n e d on p a r e n t e r a l n u t r i t i o n f o r the e n t i r e 13 1/2 y e a r s o f h i s l i f e . The group was s u b d i v i d e d i n t o 82 a c u t e p a t i e n t s r e q u i r i n g temporary HPN and 51 c h r o n i c p a t i e n t s r e q u i r i n g l i f e l o n g n u t r i t i o n a l s u p p o r t . The former group had a c a t h e t e r l i f e on average o f 68 days and an i n c i d e n c e o f one e p i s o d e o f c a t h e t e r s e p s i s p er 3 c a t h e t e r y e a r s . The l a t t e r group's average c a t h e t e r l i f e was 8 months and i n f e c t i o n r a t e was one e p i s o d e per 2.6 c a t h e t e r y e a r s . No deaths were r e p o r t e d due t o HPN. The low i n c i d e n c e o f s e p s i s was a t t r i b u t e d t o t h r e e f a c t o r s : f i r s t , t h e p a t i e n t s ' and f a m i l i e s ' c a r e f u l - 18 -e d u c a t i o n about a s e p t i c t e c h n i q u e and the importance o f a d h e r i n g to them; second, the home environment which i s s a f e r than t h a t o f the h o s p i t a l ; t h i r d , the g e n e r a l l y b e t t e r o v e r a l l h e a l t h o f HPN p a t i e n t s compared t o h o s p i t a l i z e d p e o p l e . The T o r o n t o General H o s p i t a l group showed i n 40 p a t i e n t s an average c a t h e t e r s u r v i v a l r a t e o f 15.5 months ( J e e j e e b h o y , 1980). One death i n t h i s group was a t t r i b u t e d t o HPN where a p a t i e n t f a i l e d t o p r o p e r l y c a r e f o r h i s c a t h e t e r . H o s p i t a l r e - a d m i s s i o n f o r t h e s e p a t i e n t s , who were o b s e r v e d f o r a t o t a l o f 1053 months, was 6% o f the t o t a l HPN t i m e . T a b l e 2-1 shows a summary o f t h e s e r e s u l t s as w e l l as a number o f s t u d i e s o f HPN i n c h i l d r e n , which a r e d i s c u s s e d l a t e r . I t i s not p r a c t i c a l t o compare c r i t i c a l l y the r e s u l t s o f t h e s e s t u d i e s because they c o v e r o v e r 11 y e a r s of HPN t h e r a p y from i t s b e g i n n i n g , and because the HPN program, t h e r a p y , p a t i e n t age and d i s e a s e c h a r a c t e r i s t i c s vary w i t h each s t u d y . However, a l l r e p o r t s do su g g e s t o v e r a l l s a t i s f a c t i o n w i t h HPN. T a b l e 2-1. Summary o f HPN R e s u l t s R e f e r e n c e A d u l t s # o f P t . S e p t i c e m i a 1 case per C a t h e t e r L i f e Range (mon) Mean (mon) H o s p i t a l i z a t i o n % HPN Time Ivey 1975 40 R i e l l a 1976 43 G u n d f e s t 1979 22 J e e j e e b h o y 1980 40 Robb 1983 49 S t e i g e r 1983 50 D u d r i c k 1984 133 Rannen 1986 43 5.5 y e a r s 2.6 y e a r s 1.9 y e a r s 1-36 9.4 6 15.5 22 13 - 19 -T a b l e 2-1. Summary o f HPN R e s u l t s Cont'd. R e f e r e n c e # Chi 1dren o f P t . S e p t i c e m i a 1 c a s e p er C a t h e t e r L i f e Range Mean (mon) (mon) H o s p i t a l i z a t i o n % HPN Time Byrne 1977 6 9 S t r o b e ! 1978/79 34 5.5 y e a r s Cannon 1980 8 6-23 R a l s t o n 1984 8 6 6 V 3 8 V 2 3 % a a. I n f a n t s a t 6 months/12 months/24 months o f age. PART 2: HOME PARENTERAL NUTRITION IN CHILDHOOD P a r e n t e r a l n u t r i t i o n f o r c h i l d r e n as w e l l as a d u l t s has been shown t o be a s a f e and e f f e c t i v e form o f t h e r a p y . Over t he p a s t f i f t e e n y e a r s , t o t a l p a r e n t e r a l n u t r i t i o n has been advanced t o the p o i n t where m e t a b o l i c i n t e g r i t y can be m a i n t a i n e d r e g a r d l e s s o f the s e v e r i t y o f the i l l n e s s o r organ d i s e a s e ( Z l o t k i n , 1985). C h i l d r e n o f a l l ages, from premature b a b i e s t o a d o l e s c e n t s , have r e c e i v e d t o t a l p a r e n t e r a l n u t r i t i o n . D u r a t i o n o f the t h e r a p y has ranged from days t o y e a r s . The number o f c h i l d r e n who have r e c e i v e d t o t a l p a r e n t e r a l n u t r i t i o n (TPN) a t home i s , however, r e l a t i v e l y s m a l l . N e v e r t h e l e s s , i t i s c l e a r t h a t c e r t a i n c h i l d r e n w i t h s e v e r e d i g e s t i v e t r a c t d i s o r d e r s can b e n e f i t from a home program. Some o f these c h i l d r e n would r e q u i r e home p a r e n t e r a l n u t r i t i o n (HPN) i n d e f i n i t e l y , w h i l e o t h e r s may have s u f f i c i e n t i n t e s t i n a l - 20 -h e a l i n g and a d a p t a t i o n t o p e r m i t gradual resumption o f t o t a l e n t e r a l a l i m e n t a -t i o n ( S t r o b e l , 1978). E x p e r i e n c e w i t h HPN i n a p e d i a t r i c age group has been g r a d u a l l y i n c r e a s i n g . In 1978, i t was e s t i m a t e d t h a t the t o t a l p e d i a t r i c p a t i e n t e x p e r i e n c e w i t h t h i s t e c h n i q u e o f HPN numbered l e s s than 12 ( S t r o b e l , 1978). S i n c e t h e n , many more c h i l d r e n have r e c e i v e d t r e a t m e n t , but the t o t a l number o f r e p o r t e d c a s e s i s s t i l l s m a l l . In 1986, Howard r e p o r t e d t h a t 10 t o 20% o f HPN p a t i e n t s were l e s s than 20 y e a r s o f age (Howard, 1986). The l a r g e s t c e n t e r f o r HPN f o r c h i l d r e n i s l o c a t e d i n Los A n g e l e s , C a l i f o r n i a , where a very a c t i v e academic m e d i c a l group a s s o c i a t e d w i t h the U n i v e r s i t y o f C a l i f o r n i a (UCLA) has p u b l i s h e d w i d e l y . In p r i n c i p l e , p a r e n t e r a l n u t r i t i o n f o r c h i l d r e n i s s i m i l a r t o t h a t f o r a d u l t s . In p r a c t i c e , however, t h e r a p y o f c h i l d r e n i s more c o m p l i c a t e d and r e q u i r e s c l o s e r m o n i t o r i n g ( G o l d b e r g , 1979). Due t o the p h y s i c a l growth and development t h a t t a k e s p l a c e i n c h i l d h o o d , n u t r i t i o n a l r e q u i r e m e n t s change f r e q u e n t l y and must be a c c o u n t e d f o r by any p a r e n t e r a l n u t r i t i o n regimen. I n d i c a t i o n s f o r HPN i n c h i l d r e n are s i m i l a r t o t h o s e f o r a d u l t s but a l s o i n c l u d e use i n c h i l d r e n where growth r e t a r d a t i o n has o c c u r r e d secondary t o mal-n u t r i t i o n . R e p o r t s from UCLA over the p a s t ten y e a r s have o u t l i n e d some o f t h e s e u s e s . A r e v i e w o f some o f t h e s e r e p o r t s f o l l o w s . In 1977, the f i r s t r e p o r t from UCLA d e s c r i b e d t h e r a p y f o r s i x c h i l d r e n aged 2 t o 17 y e a r s ( B y r n e , 1977). These p a t i e n t s a l l had B r o v i a c c a t h e t e r s i n s e r t e d i n the o p e r a t i n g room under g e n e r a l a n a e s t h e t i c . Each c h i l d underwent an a d a p t i v e phase o f 14 t o 21 days o f h o s p i t a l i z a t i o n d u r i n g which the d u r a t i o n o f the s o l u t i o n i n f u s e d was d e c r e a s e d from a 24 hour c o n t i n u o u s i n f u s i o n t o a 12 hour p e r i o d but w i t h c o n s t a n t d a i l y volumes o f s o l u t i o n s m a i n t a i n e d . Both - 21 -p a t i e n t s and p a r e n t s , where p o s s i b l e , were i n s t r u c t e d i n the c a r e o f the c a t h e t e r and a d m i n i s t r a t i o n o f s o l u t i o n . When p a t i e n t s were s t a b l e c l i n i c a l l y and p r o p e r l y i n s t r u c t e d , they were d i s c h a r g e d home. A f t e r d i s c h a r g e , they were seen weekly a t an o u t - p a t i e n t c l i n i c f o r one month, then e v e r y two weeks f o r 2 months, and then monthly u n l e s s problems d e v e l o p e d . S o l u t i o n s were s u p p l i e d weekly from the h o s p i t a l pharmacy and kept under r e f r i g e r a t i o n i n the p a t i e n t ' s home u n t i l r e q u i r e d . No p r e p a r a t i o n was r e q u i r e d by p a t i e n t s o r p a r e n t s . R e s u l t s showed t h a t 3 p a t i e n t s were r e - a d m i t t e d t o h o s p i t a l 13 times f o r a t o t a l o f 103 days o r 9% o f the combined e x p e r i e n c e on HPN. Seven r e - a d m i s s i o n s were due t o the pr i m a r y d i s e a s e and 6 due t o c a t h e t e r i n f e c t i o n s . No p a t i e n t had s i g n i f i c a n t problems w i t h e l e c t r o l y t e o r c a l o r i e imbalance. The 4 o l d e s t p a t i e n t s l i v e d r e l a t i v e l y normal l i v e s a t home and 4 o f the 6 were a b l e t o d i s c o n t i n u e HPN and resume o r a l a l i m e n t a t i o n . In 1978, S t r o b e l r e p o r t e d on 34 p a t i e n t s who had been seen a t UCLA m e d i c a l c e n t e r s from 1975-78 ( S t r o b e l , 1978). The p a t i e n t s ' ages ranged from 1 1/2 t o 20 1/2 y e a r s . I n d i c a t i o n s f o r HPN i n 17 o f th e s e p a t i e n t s was Crohn's d i s e a s e . O t h e r s had i d i o p a t h i c i n t e s t i n a l p s e u d o - o b s t r u c t i o n , c y s t i c f i b r o s i s and c h r o n i c p a n c r e a t i t i s . B r o v i a c c a t h e t e r s were used f o r a l l p a t i e n t s . N u t r i e n t s o l u t i o n s were s i m i l a r t o t h o s e used i n a d u l t s and i n c l u d e d c o n c e n t r a t e d g l u c o s e s o l u t i o n s , p r o t e i n s o l u t i o n s o f c a s e i n h y d r o l y s a t e o r s y n t h e t i c amino a c i d s and f a t s o l u t i o n s . A l l s o l u t i o n s were run i n t r a v e n o u s l y by v o l u m e t r i c pump. R e s u l t s showed t h a t t h e s e p a t i e n t s r e c e i v e d 6649 days o f HPN i n t o t a l w i t h an i n d i v i d u a l range o f 23 t o 786 days. At the time o f r e p o r t i n g , 24 p a t i e n t s had d i s c o n t i n u e d t h e i r HPN and were on o r a l f e e d i n g s , w h i l e 10 had remained on HPN. Of the 17 Crohn's p a t i e n t s (aged 9 t o 20 y e a r s ) , 15 had d i s c o n t i n u e d HPN. - 22 -However, o f t h e s e , 7 had r e q u i r e d one o r more subsequent t r e a t m e n t s w i t h HPN because o f symptom r e l a p s e . A l l p a t i e n t s d i d show improvement i n n u t r i t i o n parameters as i n d i c a t e d by n o r m a l i z a t i o n o f serum albumin and w e i g h t g a i n and a l l showed improvement i n p e r c e n t i l e s t a n d i n g on s t a n d a r d growth c u r v e s ( S t r o b e l , 1978). In a l a t e r p u b l i c a t i o n , t h i s group c o n c l u d e d t h a t HPN was a s a f e and e f f e c t i v e means o f i n d u c i n g r e m i s s i o n o f c l i n i c a l symptoms and i m p r o v i n g t h e m e t a b o l i c s t a t e o f p e d i a t r i c p a t i e n t s w i t h s e v e r e Crohn's d i s e a s e d e s p i t e the f a c t t h a t o n l y 8 o f t h e 17 p a t i e n t s remained i n r e m i s s i o n a f t e r up t o 3 c o u r s e s o f HPN ( S t r o b e l , 1979). A reversal of growth arrest was seen i n 13 p a t i e n t s as a r e s u l t o f improved n u t r i t i o n , even i n p a t i e n t s r e q u i r i n g a d r e n o c o r t i c o s t e r -o i d s t o s u p p r e s s d i s e a s e a c t i v i t y . T h i s c a t c h up growth was a l s o noted by D a h l s t r o m . He found t h a t i f m a l n o u r i s h e d c h i l d r e n w i t h i n a d e q u a t e f u n c t i o n i n g o f t h e g a s t r o i n t e s t i n a l t r a c t r e c e i v e d s u f f i c i e n t n u t r i t i o n from l o n g - t e r m p a r e n t e r a l n u t r i t i o n , they c o u l d a t t a i n normal weight and h e i g h t ( D a h l s t r o m , 1985). In c o n j u n c t i o n w i t h the improved c l i n i c a l s t a t e , q u a l i t y o f l i f e was a l s o r e p o r t e d t o be improved. A l l 12 c h i l d r e n under 17 y e a r s o f age r e t u r n e d t o s c h o o l and the 5 o l d e r ones resumed p a r t - t i m e work o r advanced e d u c a t i o n . A l l p a r t i c i p a t e d i n peer group a c t i v i t i e s w i t h the o n l y r e s t r i c t i o n b e i n g rough c o n t a c t s p o r t s . I n f e c t i o n r a t e was low, one c a s e per 5.5 p a t i e n t y e a r s ( S t r o b e l , 1979). A r e p o r t o f 8 infants begun on TPN d u r i n g the f i r s t 60 days o f t h e i r l i v e s showed the b e n e f i t t o t h i s newborn group (Cannon, 1980). The i n f a n t s a l l had B r o v i a c c a t h e t e r s i n s e r t e d and r e c e i v e d s o l u t i o n s s i m i l a r t o t h o s e used i n a d u l t s . P r o t e i n s o l u t i o n s used a f t e r 3 months o f age were c a s e i n h y d r o l y s a t e , - 23 -w h i l e c r y s t a l l i n e amino a c i d s were used p r i o r t o t h i s i f the baby showed i n t o l e r a n c e t o the forme r . A s i x t e e n hour p e r i o d o f i n f u s i o n was i n i t i a l l y chosen f o r the i n f a n t s r a t h e r than t he usual t en t o f o u r t e e n hour p e r i o d because i t was f e l t a more r a p i d i n f u s i o n might r e s u l t i n c a r d i o v a s c u l a r decompensation and p r o l o n g e d p e r i o d s o f c r y i n g due to hunger. A l l i n f a n t s t o l e r a t e d the s i x t e e n hour p e r i o d . Each month, from 2 t o 6 months o f age, the r a t e o f i n f u s i o n was i n c r e a s e d t o compensate f o r growth and the hours o f i n f u s i o n g r a d u a l l y r e d u c e d t o 11 per day. At the time o f r e p o r t i n g , t h e c h i l d r e n were 7 t o 24 months o f age. A l l had a c h i e v e d growth g r e a t e r than t he 5th p e r c e n t i l e on s t a n d a r d growth c h a r t s , i l l u s t r a t i n g t h e a b i l i t y o f HPN t o s u s t a i n o p t i m a l growth i n the f i r s t 2 y e a r s o f l i f e . The range o f c a t h e t e r l i f e was from 6 t o 23 months. One c a s e o f i n f e c t i o n r e s u l t e d i n death due t o s e p t i c shock. O t h e r groups have a l s o r e p o r t e d s i m i l a r c a t h e t e r l i f e spans ( G o l d b e r g , 1974). As o u t p a t i e n t s , t h e s e c h i l d r e n were seen weekly by the p h y s i c i a n u n t i l the age o f 6 months, a f t e r which v i s i t s were o n l y as needed. F r e q u e n t i n c r e a s e s i n d a i l y n u t r i t i o n volumes was, o f c o u r s e , r e q u i r e d due t o the r a p i d growth o f c h i l d r e n i n t h i s age group. M e t a b o l i c c o m p l i c a t i o n s i n c l u d e d anemia, t r a n s i e n t i n c r e a s e s i n the l i v e r enzymes SGOT and SGPT and abnormal l i v e r b i o p s y , as w e l l as r i c k e t s r e q u i r i n g v i t a m i n D s u p p l e m e n t a t i o n (Cannon, 1980). T h i s study a l s o a ttempted t o e v a l u a t e t he developmental m i l e s t o n e s o f the c h i l d r e n . The c o n c l u s i o n was t h a t i f i n f a n t s were n e u r o l o g i c a l l y normal, a p p r o p r i a t e d e v e l o p -mental m i l e s t o n e s c o u l d be e x p e c t e d d u r i n g t he f i r s t 2 y e a r s o f l i f e . F u r t h e r , i t was f e l t t h a t the s i n g l e most i m p o r t a n t f a c t o r c o n t r i b u t i n g t o n o r m a l i z a t i o n o f n e u r o l o g i c a l development i s the home environment. The i n f a n t s who were - 24 -h o s p i t a l i z e d o r r e c e n t l y d i s c h a r g e d a t the time o f t e s t i n g s c o r e d the l o w e s t on the s t a n d a r d developmental e x a m i n a t i o n s (Cannon, 1980). In 1984, a f u r t h e r r e p o r t was p u b l i s h e d on the outcomes o f t h e s e c h i l d r e n ( R a l s t o n , 1984). The c h i l d r e n had r e c e i v e d TPN f o r 3 1/2 t o 36 months, the average b e i n g 28 months, w i t h an i n i t i a l h o s p i t a l i z a t i o n b e i n g on average 17.2 months. At the time o f the f i r s t developmental t e s t a t 6 months o f age, the c h i l d r e n had s p e n t on average 66% o f t h e i r l i v e s i n h o s p i t a l . By the second t e s t , a t 12 months o f age, 38% o f t h e i r l i v e s had been sp e n t i n h o s p i t a l , and by the t h i r d t e s t a t 24 months, o n l y 23% o f t h e i r l i v e s were spent i n the h o s p i t a l . The r e s u l t s o f t h i s t e s t i n g showed a g r a d u a l n o r m a l i z a t i o n o f growth and b e h a v i o u r development which was i n v e r s e l y r e l a t e d t o the d u r a t i o n o f h o s p i t a l i -z a t i o n . T h i s s u g g e s t s t h a t p r o l o n g e d h o s p i t a l i z a t i o n has a n e g a t i v e e f f e c t on some c h i l d r e n . A summary o f t h e s e r e s u l t s appear i n T a b l e 2-1. A f u r t h e r i n d i c a t i o n f o r HPN i n c h i l d r e n was examined by Dorney. He c o n c l u d e d t h a t i n c h i l d r e n w i t h very s h o r t bowel syndrome as a r e s u l t o f m assive s u r g e r y , HPN was o f b e n e f i t i n a l l o w i n g the r e m a i n i n g i n t e s t i n e s u f f i c i e n t time to adapt and i n c r e a s e i t s a b s o r p t i o n c a p a c i t y (Dorney, 1985). In some c a s e s , a y e a r o r more was r e q u i r e d b e f o r e p a t i e n t s c o u l d u l t i m a t e l y s u r v i v e w i t h o u t p a r e n t e r a l n u t r i t i o n . PART 3: PSYCHOSOCIAL ISSUES Home p a r e n t e r a l n u t r i t i o n i s a r e l a t i v e l y new form o f l i f e s u s t a i n i n g t h e r a p y . The t h e r a p y i n v o l v e s an u n n a t u r a l source o f f e e d i n g , o p e r a t i o n o f a c o m p l i c a t e d a p p a r a t u s and s t r i c t adherence t o s t e r i l e p r o c e d u r e s on a d a i l y - 25 -b a s i s f o r the d u r a t i o n o f t h e r a p y . I t i s a form o f t h e r a p y t h a t demands major adjustments i n the l i f e s t y l e o f the p a t i e n t s and o f t e n t h e i r f a m i l i e s . The a b i l i t y t o meet p a t i e n t s ' emotional and p s y c h o s o c i a l r e q u i r e m e n t s u l t i m a t e l y d e t e r m i n e s the s u c c e s s o r f a i l u r e o f home t h e r a p y . D e s p i t e t h i s , v e r y l i t t l e d i s c u s s i o n o f the p s y c h o l o g i c a l r e a c t i o n s o r p s y c h o s o c i a l and emotional r e q u i r e m e n t s o f the p a t i e n t s o r p a t i e n t s ' f a m i l i e s c o u l d be found i n the l i t e r a t u r e u n t i l the 1980's. S i n c e t h e n , t h e r e have been a few r e p o r t s based on the e x p e r i e n c e o f a small number o f p a t i e n t s . D e s p i t e t he s p a r s e n e s s , t h e r e a re some g e n e r a l themes t h a t run through t h i s l i t e r a t u r e . F i r s t i s the awareness o f the a d a p t a t i o n p e r i o d t h a t many p a t i e n t s go through a f t e r b e g i n n i n g an HPN program. Second i s the e f f e c t t h a t HPN has on the l i f e s t y l e s o f the p a t i e n t and t h e i r f a m i l i e s . T h i r d i s the consensus t h a t c e r t a i n p a t i e n t c h a r a c t e r i s t i c s and a s u p p o r t i v e home environment a r e i m p o r t a n t f o r a s u c c e s s f u l adjustment t o HPN. F o r example, one a u t h o r r e p o r t e d t h a t t h e r e was a d i r e c t r e l a t i o n s h i p between o v e r a l l c o m p l i a n c e t o the program regimen and the degree o f s u p p o r t i v e -ness o f the home environment ( K o i t h a n , 1985). I t i s a l s o g e n e r a l l y agreed t h a t an i m p o r t a n t d e t e r m i n a n t o f s u c c e s s f u l home c a r e i s a h o l i s t i c approach to c a r e which f o c u s e s not o n l y on the b i o l o g i c a l needs o f the p a t i e n t , b ut the psycho-s o c i a l and emo t i o n a l needs as w e l l ( B a r f o o t , 1986). T h i s next s e c t i o n summarizes the f i n d i n g s on t h e s e p s y c h o s o c i a l a r e a s . The i n f o r m a t i o n comes from t he l a r g e c e n t e r s o f academic HPN e x p e r i e n c e a t T o r o n t o , S e a t t l e , C l e v e l a n d , R o c h e s t e r and Copenhagen. - 26 -A d a p t a t i o n t o Home P a r e n t e r a l N u t r i t i o n The p e r i o d o f a d a p t a t i o n t o HPN, a l t h o u g h unique t o each i n d i v i d u a l , can c r u d e l y be p l a c e d i n t o t h r e e phases. The i n i t i a l phase i s o f t e n c h a r a c t e r -i z e d by a r e a c t i o n o f d i s b e l i e f o r d e n i a l o f the permanence o f the t h e r a p y . T h i s i s f o l l o w e d by a growing awareness o f p a i n , sorrow, anger and g r i e f and a p r e - o c c u p a t i o n w i t h l o s s o f the bowel and the a b i l i t y t o e a t ( P r i c e , 1979; M a c R i t c h i e , 1978). The e a r l y phase o f a d a p t a t i o n i s the most t r a u m a t i c . T h i s i s e s p e c i a l l y so f o r p a t i e n t s who have e x p e r i e n c e d an a c u t e bowel c a t a s t r o p h e such as m e s e n t e r i c i n f a r c t i o n ( L a d e f o g e d , 1980; G u l l edge, 1980; R o b i n o v i t c h , 1981). F o r t h e s e p e o p l e , t h i s may be t h e i r f i r s t e x p e r i e n c e w i t h i l l n e s s . D e p r e s s i v e symptoms a r e common and f e a r s enormous i n t h i s group who i n i t i a l l y a r e unable to r e c o n c i l e t h e m s e l v e s w i t h the r e a l i t y t h a t t h e i r n u t r i t i o n a l i n t a k e may permanently depend on p a r e n t e r a l n u t r i t i o n . F o r the l a r g e r group o f p a t i e n t s who have not had an ac u t e e p i s o d e o f i l l n e s s but r a t h e r a c h r o n i c h i s t o r y o f i l l n e s s , from, f o r example, Crohn's d i s e a s e , the i n i t i a l a djustment i s l e s s t r a u m a t i c . These p e o p l e o f t e n have had a h i s t o r y o f numerous h o s p i t a l a d m i s s i o n s and m u l t i p l e s u r g e r i e s . O f t e n they have a l r e a d y a l t e r e d t h e i r a c t i v i t i e s as workers o r s t u d e n t s and made s o c i a l a d j u s t m e n t s b e f o r e they s t a r t e d on HPN (L a d e f o g e d , 1980). The p a t i e n t s who have been c h r o n i c a l l y i l l t e n d t o view the i d e a o f HPN both w i t h a n x i e t y and r e l i e f . F o r many, i t o f f e r s a means t o r e g a i n independence from c h r o n i c d i a r r h e a , p a i n and more s u r g e r y ( R o b i n o v i t c h , 1981). O f t e n t h e i r f e e l i n g s o f anger, l o s s and f e a r have a l r e a d y been worked thro u g h ( G u l l e d g e , 1980). The second phase o f a d a p t a t i o n t o HPN i s a gradual p e r i o d o f r e o r g a n i z a t i o n i n which p a t i e n t s s t r u g g l e t o i n c o r p o r a t e the l o s s , a c c e p t - 27 -l i m i t a t i o n s , adapt to a new way o f l i v i n g and e s t a b l i s h a new s t a t e o f e q u i l i -brium ( P r i c e , 1979). T h i s s t a g e i s o f t e n f a c i l i t a t e d once the p a t i e n t has a t t a i n e d a maximal degree o f p h y s i c a l h e a l t h on p a r e n t e r a l n u t r i t i o n and the c r i t i c a l p s y c h o l o g i c a l i s s u e s have been a d d r e s s e d . The t r a n s f e r from h o s p i t a l t o home o c c u r s a t t h i s s t a g e ( M a c R i t c h i e , 1978). The final stage o f adjustment o c c u r s o u t s i d e the h o s p i t a l . However, not a l l p a t i e n t s a r e a b l e t o make a s a t i s f a c t o r y adjustment t o HPN. P r i c e c o n c l u d e d t h a t i t was the p a t i e n t ' s ego, s t r e n g t h o f d e t e r m i n a t i o n , and f a m i l y s u p p o r t system t h a t make the d i f f e r e n c e between a m e n t a l l y h e a l t h y a d a p t a t i o n and a l i f e o f c h r o n i c d y s f u n c t i o n . F u r t h e r , he sugg e s t e d t h a t t h e r e i s a c o r r e l a t i o n between p h y s i c a l r e s t o r a t i o n and o p t i m a l s o c i a l - e m o t i o n a l f u n c t i o n i n g ( P r i c e , 1979). The P a r e n t e r a l N u t r i t i o n Apparatus A number o f a u t h o r s have d e s c r i b e d t he f e e l i n g s HPN p a t i e n t s d e v e l o p towards the p a r e n t e r a l n u t r i t i o n a p p a r a t u s . I t has been s u g g e s t e d t h a t a l o v e -hate r e l a t i o n s h i p e x i s t s s i m i l a r t o t h a t r e p o r t e d by d i a l y s i s p a t i e n t s ( P r i c e , 1979). Another a u t h o r s u g g e s t s t h a t h a v i n g t o be dependent on a machine t o keep a l i v e and b e i n g r e s t r i c t e d by i t c o n t r i b u t e s t o p s y c h o s o c i a l problems, m a r i t a l d i s c o r d , anger and r e j e c t i o n ( G u l l e d g e , 1980). Abram, i n a c l a s s i c a r t i c l e , r e p o r t e d t h a t p a t i e n t s dependent on h e m o d i a l y s i s o f t e n f e l t a l o s s o f i d e n t i t y and a f e e l i n g o f de h u m a n i z a t i o n because o f the d i a l y s i s machine (Abram, 1970). F u r t h e r , he d e s c r i b e d a c o n f l i c t t h a t a r o s e between dependence and independence; because p a t i e n t s were i n s t r u c t e d t h a t they must c o - o p e r a t e w i t h - 28 -the program and a c c e p t t h e i r dependence on i t , y e t a t the same tim e , must keep up t h e i r work and f a m i l y r e l a t i o n s . T h i s dual message l e d some p a t i e n t s t o be i n c r e a s i n g l y dependent and unable t o g i v e up the s i c k r o l e , and o t h e r s t o r e b e l a g a i n s t the program and r e f u s e t o a c c e p t t he regimen. He s u g g e s t e d t h a t f o r s u c c e s s f u l a d a p t a t i o n t o dependence on a machine f o r l i f e t o o c c u r , an e m o t i o n a l l y s t a b l e home environment and a h i g h degree o f m o t i v a t i o n towards a s p e c i f i c goal were p r e r e q u i s i t e s . S i m i l a r f e e l i n g s and problems r e g a r d i n g the p a r e n t e r a l n u t r i t i o n a p p a r a t u s have been c i t e d . P s y c h o s o c i a l I s s u e s f o r t h e HPN P a t i e n t The embarkation on any home p a r e n t e r a l n u t r i t i o n program n e c e s s i t a t e s a g r e a t many adjus t m e n t s i n a p a t i e n t ' s d a i l y l i f e a c t i v i t i e s and those o f t h e i r f a m i l i e s . F e e l i n g s o f d e p r e s s i o n o v e r the i n a b i l i t y t o e a t , a change i n per c e p -t i o n o f body image, and a n x i e t y r e g a r d i n g t he f u t u r e a r e common. These i s s u e s as w e l l as HPN's e f f e c t on a c t i v i t i e s and the r o l e o f the h e a l t h c a r e p r o f e s s i o n a l w i l l be d i s c u s s e d i n t u r n . A. Lack o f E a t i n g A b i l i t y The l o s s o f t h e a b i l i t y t o e a t i s the s i n g l e most s i g n i f i c a n t f a c t o r e n c o u n t e r e d by the HPN p a t i e n t . E a t i n g i s a normal f u n c t i o n o f everyday l i v i n g and a major a s p e c t o f the s o c i a l i z i n g p r o c e s s . I t imposes demarkations i n t h e day, i t may be a time when the f a m i l y comes t o g e t h e r , an a c t i v i t y around which much s o c i a l i n t e r a c t i o n t a k e s p l a c e , o r h i s t o r i c a l l y , a means o f h a n d l i n g - 29 -emotional problems. Loss o f t h i s a b i l i t y i s , t h e r e f o r e , p a r t i c u l a r l y s t r e s s f u l . P r i c e r e p o r t e d t h a t d e p r e s s i o n was o m n i p r e s e n t i n the e a r l y s t a g e s but d i m i n i -shed as p a t i e n t s and f a m i l i e s l e a r n e d t o adapt ( P r i c e , 1979). He a l s o r e p o r t e d t h a t e v e r y p a t i e n t m i s s e d and c r a v e d f o o d , t h a t they were a t times o b s e s s e d w i t h f o o d and the o r a l i n t a k e and t h a t they m i s s e d the demarkations o f the day which mealtime had always p r o v i d e d . M a c R i t c h i e s u g g e s t e d t h a t the l o s s o f such a v i t a l p r i m i t i v e f u n c t i o n c o u l d be viewed as a l o s s o f a c t i v i t y which had been i n c o r p o r a t e d i n t o the psyche from the e a r l i e s t s t a g e o f i n f a n c y ( M a c R i t c h i e , 1979). Other a u t h o r s p o i n t e d out t h a t the p a t i e n t was c o n s t a n t l y reminded o f the importance o f f o o d by the media ( P e r l , 1980). T h i s a u t h o r encouraged h i s p a t i e n t s t o spend mealtime i n the usual way, e a t i n g what they c o u l d . Another per s o n c i t e d the i m p o r t a n c e o f a n o t h e r f a m i l y member who c o u l d a s s i s t w i t h the management o f the mealtime s i t u a t i o n w i t h o u t c r e a t i n g t e n s i o n s (Robi'novitch, 1981). B. Body Image I t has been w e l l documented t h a t c h r o n i c i l l n e s s and s u r g e r y o f the type e x p e r i e n c e d by the HPN p a t i e n t s have a n e g a t i v e e f f e c t on the way p a t i e n t s p e r c e i v e t h e i r body; p h y s i c a l l y , a e s t h e t i c a l l y and s o c i a l l y . Many r e p o r t t h a t they l o o k e d "weird" o r deformed o r were no l o n g e r a whole per s o n ( P e r l , 1980; P r i c e , 1979). - 30 -C. A n x i e t y A n x i e t y i s an emotion e x p r e s s e d by most HPN p a t i e n t s . There i s a hig h degree o f f e a r o f t h e unknown, e s p e c i a l l y i n the e a r l y months o f t h e r a p y . P a t i e n t a n x i e t y i s a l s o r e l a t e d to the management o f the HPN p r o c e d u r e s , and the o p e r a t i o n o f the equipment. P a t i e n t s a r e c o n c e r n e d about the dangers o f the t h e r a p y i n c l u d i n g i n f e c t i o n , pump m a l f u n c t i o n and a i r embolism. P e r l r e p o r t e d t h a t the degree o f a n x i e t y d e c r e a s e d w i t h time as p a t i e n t s became more c o n f i d e n t t h a t they c o u l d h a n d l e a c r i s i s and when they were a s s u r e d t h a t p r o f e s s i o n a l h e l p was a v a i l a b l e a t a l l times s h o u l d they r e q u i r e i t ( P e r l , 1980). The group a t T o r o n t o General H o s p i t a l r e p o r t e d t h a t t o a l l e v i a t e a n x i e t y , a back-up person was t r a i n e d i n HPN p r o c e d u r e s and t h a t every p a t i e n t , w h i l e s t i l l i n h o s p i t a l , was i n t r o d u c e d t o o t h e r neophyte TPN p a t i e n t s i n a d d i t i o n t o some v e t e r a n s ( P r i c e , 1979). J o h n s t o n a l s o i n d i c a t e d the importance o f o t h e r HPNers to the p a t i e n t . She s u g g e s t s t h a t s u p p o r t groups o r n e w s l e t t e r s may o f f e r a forum f o r p a t i e n t s t o s u p p o r t each o t h e r and communicate c o n c e r n s o r s o l u t i o n s to mutual problems w i t h o t h e r HPN p a t i e n t s ( J o h n s t o n , 1981). D. E f f e c t on A c t i v i t i e s A number o f a u t h o r s draw a t t e n t i o n t o the way i n which the HPN p a t i e n t ' s l i f e i s a f f e c t e d . Many p a t i e n t s who run t h e i r n u t r i e n t s o l u t i o n s d u r i n g the n i g h t a r e awakened s e v e r a l t imes t o v o i d . T h i s , c o u p l e d w i t h s l eep d i s t u r -bance due t o equipment n o i s e o r worry r e g a r d i n g the p o s s i b i l i t y o f m a l f u n c t i o n , o f t e n r e s u l t s i n c h r o n i c f a t i g u e . - 31 -M a r i t a l r e l a t i o n s and sexual a c t i v i t y a r e a l s o a f f e c t e d . S e v e r a l a u t h o r s r e p o r t t h a t where c o u p l e s were i n v o l v e d i n a s t a b l e and happy r e l a t i o n -s h i p , adjustment t o the HPN was l e s s t r a u m a t i c , but where the r e l a t i o n s h i p was a l r e a d y d y s f u n c t i o n a l , HPN added s i g n i f i c a n t l y t o the d i s c o r d ( P r i c e , 1980). Younger p e o p l e s ' r e a c t i o n v a r i e d from f e e l i n g s o f i s o l a t i o n and l o s t c o n f i d e n c e i n t h e i r a b i l i t y t o perf o r m s o c i a l s k i l l s , t o l i v i n g a normal sex l i f e . O t h e r s found t h a t love-making l a c k e d s p o n t a n e i t y because o f the HPN p r o t o c o l o r f e a r e d d i s r u p t i n g the c a t h e t e r and equipment ( P r i c e , 1979; M a c R i t c h i e , 1979; Ladefoged, 1981). Where i n c r e a s e i n n u t r i t i o n l e d t o a g r e a t e r f e e l i n g o f w e l l b e i n g , some p a t i e n t s r e p o r t e d an i n c r e a s e i n t h e i r sexual a c t i v i t y . S o c i a l l i f e and l e i s u r e t ime a c t i v i t i e s may a l s o be a f f e c t e d . Some p a t i e n t s r e p o r t e d a de c r e a s e i n t h e i r a c t i v i t i e s because o f the time commitment t o HPN, but o t h e r s , where t h e i r p h y s i c a l w e l l - b e i n g had i n c r e a s e d because o f HPN, r e p o r t e d an i n c r e a s e . The l o g i s t i c s o f t r a v e l o f t e n were c i t e d as reasons f o r c u r t a i l m e n t o f t h i s a c t i v i t y , y e t some p e o p l e w i t h a g r e a t deal o f p r e - p l a n n i n g , were a b l e t o t r a v e l abroad. Many people managed t o p a r t i c i p a t e i n some p h y s i c a l a c t i v i t y w i t h the e x c e p t i o n o f c o n t a c t s p o r t s . S t a r t i n g on HPN o f t e n a f f e c t e d p e o p l e ' s a b i l i t y t o r e t u r n t o a j o b . Even i f p h y s i c i a l l y a b l e t o do so, some p a t i e n t s found t h a t r e t u r n t o a j o b l e f t l i t t l e time f o r a c t i v i t i e s o t h e r than mere work and p a r e n t e r a l n u t r i t i o n . O t h e r s f e l t t o o t i r e d t o manage a j o b f u l l - t i m e and many were c o n t e n t t o f i l l t h e day w i t h h o u sekeeping, l e i s u r e time and s o c i a l a c t i v i t y ( L a d e f o g e d , 1980). The e f f e c t on f a m i l y l i f e i s o f t e n mentioned when r e p o r t i n g on the adjust m e n t s r e q u i r e d by HPN. In many s i t u a t i o n s , HPN a f f e c t s not o n l y the p a t i e n t s , but t h e i r f a m i l i e s as w e l l . G u l l e d g e o b s e r v e d t h a t a t times the - 32 -p a t i e n t ' s f a m i l y i s more s e v e r e l y a f f e c t e d by HPN than the p a t i e n t ( G u l l e d g e , 1980). He a l s o c o n c l u d e d t h a t i f t h e r e was one c o n s i s t e n t theme a s s o c i a t e d w i t h b e g i n n i n g HPN, i t was the need f o r p r o f e s s i o n a l s t o a l s o work w i t h the f a m i l y . Many p a r t n e r s o f HPN p a t i e n t s found t h a t a d d i t i o n a l time was r e q u i r e d t o a s s i s t w i t h h o u sekeeping, t h a t t h e i r s o c i a l l i f e was r e s t r i c t e d and t h a t p y s c h o l o g i c a l changes i n the p a t i e n t , such as d e p r e s s i o n o r i r r i t a b i l i t y , p e r i o d i c a l l y caused d i f f i c u l t i e s ( L a d e f o g e d , 1980). Other a u t h o r s s u g g e s t e d t h a t the f a m i l y b a l a n c e was d i s r u p t e d when an HPN p a t i e n t r e t u r n e d home a f t e r a p e r i o d o f h o s p i t a l i z a -t i o n . They urged f a m i l i e s and p a t i e n t s t o share emotions ( P r i c e , 1980). J o h n s t o n t o o , s t r e s s e d t h a t o t h e r p e o p l e i n the HPNer's l i f e s h o u l d be i n c l u d e d i n d i s c u s s i o n s w i t h p r o f e s s i o n a l s p r i o r t o h o s p i t a l d i s c h a r g e . She d e s c r i b e d how p a t i e n t s who had been dependent b e f o r e HPN may be l e s s so a f t e r , and t h a t a l t e r a t i o n s i n r e l a t i o n s h i p p a t t e r n s i n the h o u s e h o l d can c r e a t e s t r e s s and disharmony w i t h i n the f a m i l y u n i t ( J o h n s t o n , 1981). She s u g g e s t e d t h a t s o c i a l workers may be o f h e l p i n such s i t u a t i o n s . In o t h e r c a s e s , p a t i e n t s may f i n d t h e m s e l v e s more dependent on t h e i r f a m i l i e s than they were p r e v i o u s l y . The f a m i l y ' s r e a c t i o n s , o f c o u r s e , were v a r i e d . Many f e l t p l e a s e d t o a s s i s t the p a t i e n t , e s p e c i a l l y when they knew p r o f e s s i o n a l h e l p was a v a i l a b l e , s h o u l d they r e q u i r e i t ( G u l l e d g e , 1980). B a r f o o t s t r e s s e d the importance o f meeting the f a m i l y ' s s o c i a l needs ( B a r f o o t , 1986). She f e l t t h a t a nurse f a m i l i a r w i t h the p a t i e n t and the f a m i l y i n the h o s p i t a l s h o u l d m a i n t a i n c o n t a c t w i t h them a t home a f t e r d i s c h a r g e o f the HPN p a t i e n t . She recommended t h a t t h e r e s h o u l d then be a p e r i o d o f weaning the f a m i l y from dependence on h e a l t h c a r e p r o f e s s i o n a l s so t h a t the f a m i l y c o u l d r e g a i n i t s sense o f u n i t y and r e t u r n t o a normal l e v e l o f f u n c t i o n . - 33 -E. The Role o f t h e H e a l t h Care P r o f e s s i o n a l The r o l e t h e h e a l t h p r o f e s s i o n a l s h o u l d p l a y i n h e l p i n g HPN p a t i e n t s deal w i t h t he l i f e a d j u s t m e n t s n e c e s s i t a t e d by the t h e r a p y i s v a r i a b l e . However, the consensus seems t o be t h a t most p a t i e n t s , a t l e a s t i n i t i a l l y , w i l l b e n e f i t from some professional assistance. S o c i a l workers may be a b l e t o a s s i s t people deal w i t h c o n c e r n s about body image, sexual a c t i v i t y and f a m i l y r e l a t i o n s h i p s ( J o h n s t o n , 1981). A l t e r n a t i v e l y , an i n t r a v e n o u s t h e r a p y n u r s e may be a b l e t o meet thes e needs. P s y c h i a t r i s t s t o o , may be u s e f u l t o e v a l u a t e and counsel p a t i e n t s and t o a d v i s e o t h e r team members (Abram, 1970). F i n a l l y , t h e importance o f the team approach was s t r e s s e d by a number o f workers i n the f i e l d . Abram f e l t t h a t a team i n c l u d i n g a d o c t o r , n u r s e , p h a r m a c i s t , d i e t i c i a n , p s y c h i a t r i s t and p s y c h i a t r i c nurse were a l l r e q u i r e d to handle the p h y s i c a l and p s y c h o l o g i c a l problems f a c e d by such p a t i e n t s (Abram, 1970). J o h n s t o n d e s c r i b e d the h i g h p s y c h o s o c i a l c o s t s o f p a r t i c i p a t i n g i n an HPN program and the need f o r HPN p a t i e n t s t o r e c e i v e a h o l i s t i c approach to t h e i r management and c a r e p l u s ongoing s u p p o r t from t h e i r c a r e g i v e r s ( J o h n s t o n , 1981). G u l l e d g e found t h a t most h e a l t h c a r e p r o v i d e r s i n v o l v e d i n home p a r e n t e r a l n u t r i t i o n were somewhat l i m i t e d i n t h e i r u n d e r s t a n d i n g o f the p s y c h o l o g i c a l i s s u e s i m p o r t a n t t o the p a t i e n t s due t o l a c k o f time or knowledge o f r e l e v a n t a s p e c t s o f HPN t h e r a p y ( G u l l e d g e , 1980). He f e l t t h a t i t would not be p o s s i b l e f o r a l l t he s t a f f t o know p a t i e n t p e r s o n a l i t y t r a i t s o r f a m i l y dynamics but t h a t i t was i m p o r t a n t t o a t l e a s t have an awareness o f those i s s u e s which are s i g n i f i c a n t to each p a t i e n t . - 34 -CHAPTER 3: THE BRITISH COLUMBIA HPN SITUATION Home p a r e n t e r a l n u t r i t i o n has been a v a i l a b l e i n B r i t i s h Columbia s i n c e 1972 when t h e f i r s t p a t i e n t began t o r e c e i v e s o l u t i o n s and s u p p l i e s . S e v e r a l more p a t i e n t s were added i n t h e 1970's. Some were t r a i n e d i n Vancouver t o s e l f -a d m i n i s t e r p a r e n t e r a l n u t r i t i o n , w h i l e o t h e r s were t r a i n e d out o f t h e p r o v i n c e i n Edmonton, A l b e r t a and S e a t t l e , Washington. S o l u t i o n s and s u p p l i e s f o r t h e s e p a t i e n t s have always been p a i d f o r by t h e p r o v i n c i a l government t h r o u g h t h e M i n i s t r y of H e a l t h . The e a r l y p a t i e n t s were d e a l t w i t h on an i n d i v i d u a l b a s i s , i n an i n f o r m a l way, as no program then e x i s t e d . Then, as t h e number o f p a t i e n t s r e q u i r i n g HPN i n c r e a s e d i n t h e 1980's, more formal arrangements were made. However, even t o d a y t h e r e a r e no government w r i t t e n o b j e c t i v e s or g o a l s f o r t h e HPN s e r v i c e , and v e r y few w r i t t e n p o l i c i e s . Two h o s p i t a l s i n t h e p r o v i n c e have been d e s i g n a t e d f o r t r a i n i n g HPN p a t i e n t s , namely t h e Vancouver General H o s p i t a l and S t . P a u l ' s H o s p i t a l i n Vancouver. D e s p i t e t h i s , n e i t h e r h o s p i t a l ' s t e a c h i n g program has been s e p a r a t e l y funded by t h e M i n i s t r y o f H e a l t h t h r o u g h H o s p i t a l Programs. Monies f o r HPN t e a c h i n g have come from o t h e r budgets i n t h e h o s p i t a l . The U n i v e r s i t y of B r i t i s h Columbia H e a l t h S c i e n c e s C e n t r e Acute Care U n i t , B r i t i s h Columbia C h i l d r e n ' s H o s p i t a l and Royal I n l a n d H o s p i t a l , Kamloops, have a l l t r a i n e d a number o f p a t i e n t s a l t h o u g h none i s on t h e l i s t o f d e s i g n a t e d h o s p i t a l s . S i n c e 1983, more than 20 p a t i e n t s per y e a r have r e c e i v e d HPN i n B.C. In March, 1986, t h e r e were 24 p a t i e n t s . T h i r t e e n o f t h e s e p a t i e n t s had been t r a i n e d at S t . P a u l ' s H o s p i t a l , 6 at Vancouver General H o s p i t a l , 4 at B.C. C h i l d r e n ' s H o s p i t a l , and 1 at Royal I n l a n d H o s p i t a l . - 35 -U n f o r t u n a t e l y , data a r e not a v a i l a b l e t o show the e x a c t growth i n HPN i n terms o f p a t i e n t days o v e r the p a s t 15 y e a r s . P a r t o f the r e a s o n i s t h a t the B.C. M i n i s t r y o f H e a l t h d i d not r e c o g n i z e o r s e p a r a t e l y fund HPN u n t i l 1984. The s e r v i c e , i t s o b j e c t i v e s , g o a l s and p o l i c i e s a r e now under review by the government and changes a r e ex p e c t e d i n the near f u t u r e . The f o l l o w i n g d e s c r i p -t i o n c o n c e r n s t he s i t u a t i o n as i t s t a n d s i n B.C. a t the time o f w r i t i n g ( A p r i l , 1987). Government funded s u p p l i e s and s o l u t i o n s come from two s o u r c e s . The pri m a r y s o u r c e i s the Kidney Dialysis Service (KDS). KDS became i n v o l v e d w i t h t h i s f u n c t i o n i n the 1970's as i t was then the o n l y government agency e q u i p p e d t o nandle t he warehousing and d e l i v e r y f u n c t i o n s r e q u i r e d . Today, these f u n c t i o n s a r e s t i l l p r o v i d e d by KDS, but i t p r o v i d e s no c l i n i c a l i n p u t nor i s i t i n v o l v e d i n s o l u t i o n p r e p a r a t i o n . KDS o r d e r s , s t o r e s and d e l i v e r s unmixed s o l u t i o n s , a d d i t i v e s , a n c i l l a r y s u p p l i e s and equipment t o HPN p a t i e n t s anywhere i n the p r o v i n c e . I n t r a v e n o u s i n f u s i o n pumps a l s o come from KDS. A p r i v a t e company, Travacare, i s the o t h e r o r g a n i z a t i o n i n v o l v e d w i t h p r o v i d i n g HPN p a t i e n t s ' s o l u t i o n s . T h i s company has c o n t r a c t e d w i t h t h e government t o s u p p l y p a r t i a l l y mixed s o l u t i o n s ( c o r e ) as w e l l as c o m p l e t e l y mixed s o l u t i o n s t o c e r t a i n approved p a t i e n t s . A core solution i s an i n d i v i d u a l i z e d m i x t u r e o f p r o t e i n and c a r b o h y d r a t e s o l u t i o n s . These s o l u t i o n s a r e mixed i n t h e i r f a c i l i t y i n C a l g a r y , A l b e r t a , and d e l i v e r e d t o the p a t i e n t ' s home anywhere i n B.C. The a d d i t i v e s ( e l e c t r o l y t e s , v i t a m i n s and t r a c e elements) must s t i l l be added by the p a t i e n t . A l l p a t i e n t s who r e c e i v e t h e s e s o l u t i o n s , both c o m p l e t e l y mixed and c o r e , a r e s t i l l r e q u i r e d t o o r d e r a n c i l l a r y s u p p l i e s from KDS. - 36 -In order f o r a p a t i e n t to rece i v e HPN funded by the B.C. M i n i s t r y of Health, the p a t i e n t ' s p h y s i c i a n must apply to KDS i n w r i t i n g . Apparently, no request f o r s e r v i c e has ever been denied. Approval f o r admission to the s e r v i c e must be obtained from the Medical D i r e c t o r of the Kidney D i a l y s i s S e r v i c e . A minimum of two weeks i s required f o r approval. The p a t i e n t ' s p h y s i c i a n must al s o send the HPN p r e s c r i p t i o n to the Vancouver Bureau pharmacist. I f the phy s i c i a n wishes the p a t i e n t to r e c e i v e Travacare pre-mixed s o l u t i o n s , a w r i t t e n request must be submitted a t the time of a p p l i c a t i o n to the Medical D i r e c t o r of KDS who has the power to make the f i n a l d e c i s i o n (KDS HPN Procedures, 1986). P a t i e n t s are re s p o n s i b l e f o r re - o r d e r i n g s u p p l i e s and s o l u t i o n s . Orders are received by the Vancouver Bureau pharmacist and f i l l e d by the Medical D i s t r i b u -t i o n Center of the M i n i s t r y of Health. D e l i v e r i e s to the p a t i e n t s occur every 6 weeks where p a t i e n t s s e l f - m i x the s o l u t i o n s , or every 3 months, where they r e c e i v e pre-mixed s o l u t i o n s . More frequent d e l i v e r i e s can be arranged i f a p a t i e n t has storage problems. Changes i n p r e s c r i p t i o n s f o r HPN s o l u t i o n s r e q u i r e some time. For changes i n s e l f - m i x s o l u t i o n s and a d d i t i v e s , a w r i t t e n p r e s c r i p t i o n from the p h y s i c i a n i s r e q u i r e d 4 working days before r e l e a s e . For pre-mixed s o l u t i o n s and a d d i t i v e s , a p r e s c r i p t i o n i s re q u i r e d 6 working days before release and the change w i l l occur when the next batch of s o l u t i o n s i s prepared (KDS HPN Procedures, 1986). Costs of HPN Cost of HPN i s high. Operating costs f o r adults are on average $140.00 per day f o r t o t a l l y mixed s o l u t i o n s , $111.00 per day f o r core s o l u t i o n s , and - 37 -$84.00 per day f o r s e l f - m i x . O p e r a t i n g c o s t s i n c l u d e n u t r i t i o n s o l u t i o n s , v i t a m i n s , t u b i n g and a n c i l l a r y s u p p l i e s . C o s t s f o r c h i l d r e n , a l l o f whom r e c e i v e t o t a l l y mixed s o l u t i o n s , are on average $131.00 per day. T o t a l o p e r a t i n g c o s t s f o r t h e HPN program i n B.C. f o r 1986 was a p p r o x i m a t e l y $702,660 f o r 24 p a t i e n t s . A breakdown o f t h e s e c o s t s appears i n T a b l e 3-1. T a b l e 3-1. O p e r a t i n g C o s t o f HPN 1986 A. 2 a d u l t s on t o t a l l y mixed s o l u t i o n s ( a v e r a g e number o f i n f u s i o n s per week = 6, o r 313 per y e a r ) $ per p a t i e n t day P r o t e i n and C a r b o h y d r a t e S o l u t i o n s 96 L i p i d S o l u t i o n s 20 T u b i n g and A n c i l l a r y S u p p l i e s 20 V i t a m i n s 4 140 C o s t per p a t i e n t per y e a r = $140 x 313 days = $43,820 C o s t f o r 2 p a t i e n t s = $87,640 B. 8 a d u l t s on c o r e s o l u t i o n s ( a v e r a g e number o f i n f u s i o n s per week = 5, o r 261 p e r y e a r ) $ per p a t i e n t day P r o t e i n and C a r b o h y d r a t e S o l u t i o n s 67 L i p i d S o l u t i o n s 20 T u b i n g and A n c i l l a r y S u p p l i e s 20 V i t a m i n s 4 111 C o s t per p a t i e n t per y e a r = $111 x 261 days = $28,971 C o s t f o r 8 p a t i e n t s = $231,768 - 38 -10 a d u l t s on s e l f - m i x s o l u t i o n s ( a v e r a g e number o f i n f u s i o n s per week = 5, o r 261 per y e a r ) $ per p a t i e n t day P r o t e i n and C a r b o h y d r a t e S o l u t i o n s 40 L i p i d S o l u t i o n s 20 T u b i n g and A n c i l l a r y S u p p l i e s 20 V i t a m i n s 4 84 Co s t per p a t i e n t per y e a r = $84 x 261 days = $21,924 C o s t f o r 10 p a t i e n t s = $219,240 4 c h i l d r e n on t o t a l l y mixed s o l u t i o n s ( a v e r a g e number o f i n f u s i o n s per week = 6, o r 313 per y e a r ) $ per p a t i e n t day P r o t e i n and C a r b o h y d r a t e S o l u t i o n s 85 L i p i d S o l u t i o n s 20 T u b i n g and A n c i l l a r y S u p p l i e s 20 V i t a m i n s 6 131 C o s t per p a t i e n t per y e a r = $131 x 313 days = $ 41,003 C o s t f o r 4 p a t i e n t s = $164,012 T o t a l HPN O p e r a t i n g C o s t 1986 (24 p a t i e n t s ) = $702,660 Average HPN O p e r a t i n g C o s t 1986 p e r p a t i e n t = $ 29,278 per y e a r Note t h a t t h i s c o s t o n l y c o v e r s o p e r a t i n g c o s t s o f s o l u t i o n s and s u p p l i e s and t h e i r d e l i v e r y ; i t does not i n c l u d e t h e c a p i t a l c o s t s o f i n t r a v e n o u s i n f u s i o n pumps ( a p p r o x i m a t e l y $2,000 per pump) or IV p o l e s ( a p p r o x i m a t e l y $100 per p o l e ) nor does i t i n c l u d e any h o s p i t a l expense. - 39 -T r a i n i n g and F o l l o w - u p Training o f HPN p a t i e n t s t a k e s p l a c e w h i l e p a t i e n t s a re h o s p i t a l i z e d . Each h o s p i t a l runs i t s own program. Three h o s p i t a l s i n Vancouver (Vancouver G e n e r a l , S t . P a u l ' s , and the H e a l t h S c i e n c e s C e n t r e ) have produced t e a c h i n g manuals which a r e g i v e n t o the p a t i e n t s a f t e r d i s c h a r g e f o r r e f e r e n c e . There i s no s t a n d a r d i z a t i o n o f t e a c h i n g between t h e s e h o s p i t a l s . F o l l o w - u p o f HPN p a t i e n t s i s on an i n d i v i d u a l b a s i s . There i s no d e s i g n a t e d o u t p a t i e n t c l i n i c f o r HPN p a t i e n t s , nor i s t h e r e home v i s i t i n g by p u b l i c h e a l t h n u r s e s . P a t i e n t s a r e g e n e r a l l y seen i n t h e i r p h y s i c i a n s ' o f f i c e s . P a t i e n t s from S t . P a u l ' s H o s p i t a l may r e t u r n t o the o u t p a t i e n t c l i n i c a t the h o s p i t a l . In p r a c t i c e , however, t h i s c l i n i c i s seldom used. The i n t r a v e n o u s n urse c l i n i c i a n s i n v o l v e d w i t h t r a i n i n g do have a l i m i t e d t e l e p h o n e c o n t a c t w i t h the p a t i e n t s they have t r a i n e d . A f t e r d i s c h a r g e from h o s p i t a l t h e r e i s v i r t u a l l y no c o n t a c t w i t h t he p h a r m a c i s t s . T h e r e i s no arrangement f o r s o c i a l workers o r p s y c h i a t r i s t s t o be i n v o l v e d w i t h HPN p a t i e n t s e i t h e r i n o r out o f h o s p i t a l . A b r i e f d e s c r i p t i o n i s now g i v e n o f the s i t u a t i o n f o r t r a i n i n g t o s e l f -a d m i n i s t e r p a r e n t e r a l n u t r i t i o n i n the f o u r h o s p i t a l s i n v o l v e d . Vancouver General H o s p i t a l S i n c e 1972, when the f i r s t HPN p a t i e n t was t a u g h t a t Vancouver General H o s p i t a l (VGH), 16 p a t i e n t s have been t r a i n e d t o a d m i n i s t e r HPN. S e l e c t i o n o f p a t i e n t s f o r HPN t r a i n i n g i s a med i c a l d e c i s i o n . P a t i e n t s a r e t a u g h t by an i n t r a v e n o u s nurse c l i n i c i a n and a p h a r m a c i s t . The p e r i o d o f h o s p i t a l t r a i n i n g - 40 -i s u s u a l l y 2 t o 4 weeks, depending upon the p a t i e n t ' s l e a r n i n g a b i l i t y and the d e l i v e r y date o f the s u p p l i e s . A l t h o u g h t he f i r s t p a t i e n t was seen a t VGH i n 1972, a home p a r e n t e r a l n u t r i t i o n program was not i n s t i t u t e d by the h o s p i t a l u n t i l 1979 and the t e a c h i n g manual was not p r e p a r e d u n t i l 1983. P r i o r t o the manual's development, p a t i e n t s were t a u g h t by d i f f e r e n t p e o p l e , and t h e r e were, t h e r e f o r e , some i n c o n s i s t e n c i e s i n t h e compounding and a d m i n i s t r a t i o n t e c h n i q u e s t a u g h t . The manual s t a n d a r d i -zes the t e c h n i q u e s and p r o v i d e s the p a t i e n t s w i t h a home r e f e r e n c e . P a t i e n t s from VGH u s u a l l y have i n t r a v e n o u s a c c e s s v i a a B r o v i a c c a t h e t e r a l t h o u g h a number o f p a t i e n t s have polytetrafluorethylene (PTFE) grafts or saphenous v e i n g r a f t s . These g r a f t s c o n n e c t the femoral a r t e r y t o the femoral v e i n i n the t h i g h and p r o v i d e a s i t e f o r p l a c i n g a nee d l e i n o r d e r t o a d m i n i s t e r p a r e n t e r a l n u t r i t i o n s o l u t i o n s ( F i g u r e 3-1). PTFE g r a f t s a r e made o f a f l e x i b l e s y n t h e t i c tube w h i l e saphenous v e i n g r a f t s use the p a t i e n t ' s own v e i n t o c o n n e c t w i t h t he a r t e r y . A l l p a t i e n t s w i t h g r a f t s use an i n t r a v e n o u s i n f u s i o n pump, as i t i s not p o s s i b l e t o run p a r e n t e r a l n u t r i t i o n s o l u t i o n s by g r a v i t y due t o the p r e s s u r e e x e r t e d by the b l o o d i n the g r a f t . P a t i e n t s w i t h c e n t r a l venous c a t h e t e r s t r a i n e d a t VGH a l s o use i n t r a v e n o u s i n f u s i o n pumps. The i n t r a v e n o u s nurse c l i n i c i a n p r o v i d e s t h e p a t i e n t w i t h a b a s i c under-s t a n d i n g o f p a r e n t e r a l n u t r i t i o n , i t s a d m i n i s t r a t i o n system, knowledge o f the importance o f a s e p t i c t e c h n i q u e and awareness o f p o s s i b l e c o m p l i c a t i o n s . A l s o , p a t i e n t s a r e t a u g h t t he t e c h n i c a l s k i l l s n e c e s s a r y t o p e r f o r m t he p r o c e d u r e s , o p e r a t i o n o f the i n f u s i o n pump and how t o o r d e r s u p p l i e s (VGH TPN n u r s i n g manual, 1983). P r o c e d u r e s a r e i n i t i a l l y o b s e r v e d by the p a t i e n t and then g r a d u a l l y t a u g h t u n t i l s u p e r v i s i o n i s no l o n g e r r e q u i r e d . - 41 -a) R e f e r e n c e - VGH TPN N u r s i n g Manual, 1983 A p h a r m a c i s t a t VGH i n s t r u c t s the p a t i e n t t o mix and a d m i n i s t e r the p a r e n t e r a l n u t r i t i o n s o l u t i o n s . I n s t r u c t i o n c o v e r s the use o f n e e d l e s , s y r i n g e s , ampoules and v i a l s , as w e l l as the a c c u r a t e measurement o f a d d i t i v e s . P a t i e n t s a r e t a u g h t t o t r a n s f e r g l u c o s e and amino a c i d s o l u t i o n s t o a l a r g e p l a s t i c i n t r a v e n o u s bag u s i n g i n t r a v e n o u s t u b i n g s and t o add the n e c e s s a r y v i t a m i n s , e l e c t r o l y t e s and t r a c e elements v i a the m e d i c a t i o n p o r t i n the bag i n an a s e p t i c manner. D i s p o s a l o f m a t e r i a l s and equipment and s t o r a g e o f s o l u t i o n s i s a l s o c o v e r e d (VGH pharmacy HPN manual, 1983). The pharmacy t r a i n i n g p e r i o d i s u s u a l l y about 10 days w i t h an e v a l u a t i o n a t the end o f the s e s s i o n s . - 42 -P a t i e n t s are i n s t r u c t e d i n i t i a l l y o u t s i d e t h e pharmacy and l a t e r brought i n t o t h e pharmacy t o p r e p a r e t h e i r own s o l u t i o n s under t h e pharmacy's l a m i n a r a i r f l o w hood. P r i o r t o d i s c h a r g e , t h e i n i t i a l o r d e r o f equipment and s u p p l i e s i s done by t h e n u r s e . The p a t i e n t i s g i v e n the t e l e p h o n e numbers o f t h e p h y s i c i a n , nurse and p h a r m a c i s t t o c o n t a c t i n case o f emergency. Follow-up i s a t t h e p h y s i c i a n ' s o f f i c e . The h o s p i t a l nurse c l i n i c i a n a l s o c o n t a c t s by t e l e p h o n e each p a t i e n t e v e r y 2 months t o m o n i t o r p r o g r e s s and t o d i s c u s s any equipment changes. The o n l y p e r s o n a l c o n t a c t o c c u r s i f t h e p a t i e n t i s r e a d m i t t e d t o h o s p i t a l . It i s i n t e r e s t i n g t o note t h a t a s m a l l f o l l o w - u p study o f 3 HPN p a t i e n t s t r a i n e d at VGH was done by a pharmacy r e s i d e n t i n 1982. These p a t i e n t s were ob s e r v e d i n t h e i r homes p r e p a r i n g t h e i r s o l u t i o n s and were a l s o i n t e r v i e w e d . The r e s u l t s showed a l l 3 p a t i e n t s used u n a c c e p t a b l e compounding t e c h n i q u e s d e s p i t e good knowledge o f s a f e t y t e c h n i q u e s and p r o c e d u r e s as i n d i c a t e d by t h e i n t e r v i e w s . The a u t h o r c o n c l u d e d t h a t the p a t i e n t s were o f t e n aware o f t h e c o r r e c t way t o p r e p a r e s o l u t i o n s , but d i d not p r a c t i c e i t d u r i n g a c t u a l s o l u t i o n p r e p a r a t i o n ( L o u i e , 1983). S t . P a u l ' s H o s p i t a l S t . P a u l ' s H o s p i t a l has t r a i n e d more HPN p a t i e n t s than any o t h e r i n B.C., a p p r o x i m a t e l y 30. P a t i e n t s a r e s e l e c t e d by p h y s i c i a n s w i t h some i n p u t from a nurse c l i n i c i a n , n u t r i t i o n i s t and p h a r m a c i s t who are members o f t h e h o s p i t a l ' s n u t r i t i o n committee. T e a c h i n g i s done s o l e l y by the i n t r a v e n o u s nurse c l i n i c i a n . T o p i c s c o v e r e d i n c l u d e a d e s c r i p t i o n o f the c e n t r a l venous c a t h e t e r , - 43 -a s e p t i c t e c h n i q u e , assembly and use o f the IV equipment, c a r i n g f o r the c a t h e t e r , and p r e p a r a t i o n and a d m i n i s t r a t i o n o f the p a r e n t e r a l n u t r i t i o n s o l u t i o n s . P a t i e n t s from S t . P a u l ' s a l l have c e n t r a l venous c a t h e t e r s , u s u a l l y B r o v i a c o r Hickman. They a re not t r a i n e d t o o p e r a t e an i n f u s i o n pump as the s o l u t i o n s a r e run by g r a v i t y . P a t i e n t s a r e t a u g h t the p a r e n t e r a l n u t r i t i o n p r o c e d u r e s from a manual which has been d e s i g n e d by the s t a f f f o r t h i s purpose. P a t i e n t s may take t h i s manual home as a r e f e r e n c e . The manual i s s e t up i n a st e p - b y -s t e p format w i t h a s e r i e s o f q u e s t i o n s a t the end o f each c h a p t e r d e a l i n g w i t h problems t h a t c o u l d o c c u r . There i s a l s o a s e c t i o n d e a l i n g w i t h usual d a i l y a c t i v i t i e s which p a t i e n t s engage i n ( e x e r c i s e , housework, sexual a c t i v i t y and b a t h i n g ) , and d i s c u s s i o n o f the p a t i e n t ' s a b i l i t y t o p a r t i c i p a t e i n thes e once a t home on HPN. P a t i e n t s a re i n s t r u c t e d on how t o s e t up a s u i t a b l e c l e a n a r e a f o r HPN p r e p a r a t i o n a t home as w e l l as how t o s t o r e s o l u t i o n s and equipment ( S t . P a u l ' s H o s p i t a l P a r e n t e r a l N u t r i t i o n T e a c h i n g Manual, 1986). T e a c h i n g a t S t . P a u l ' s t a k e s 2 t o 6 weeks depending on the p a t i e n t , w i t h the average b e i n g 3 weeks. One and o n e - h a l f hours i s s p e n t i n the morning 5 days each week, w i t h the p a t i e n t . A f t e r one week o f i n s t r u c t i o n , a 1/2 hour e v e n i n g s e s s i o n i s added t o a l l o w t he p a t i e n t s t o l e a r n the hooking-up p r o c e d u r e s . A f t e r d i s c h a r g e , p a t i e n t s may r e t u r n t o an o u t p a t i e n t c l i n i c i n the h o s p i t a l . However, as i n the VGH s i t u a t i o n , t h i s i s seldom used and p a t i e n t s are u s u a l l y seen a t t h e i r p h y s i c i a n ' s o f f i c e . - 44 -Univers i ty of B r i t i s h Columbia Health Sciences Centre Hospital (UBC HSCH)  Vancouver The Univers i ty of B r i t i s h Columbia Health Sciences Centre Hospital i s not a designated teaching centre for HPN. However, i t has trained a number of pat ients . Pat ients from th is hospital do not receive supplies from the Min is t ry of Health. Instead, a l l solut ions and supplies are provided by a pr ivate company, Travacare. Payment to Travacare i s arranged by the hosp i ta l . At UBC Health Sciences Centre Hosp i ta l , the pa t ien t ' s physician i s responsible for determining the s u i t a b i l i t y of a pat ient for home parenteral nu t r i t ion and for the preparedness of the pat ient at discharge. Pat ients receive ins t ruc t ion from the hosp i ta l ' s c l i n i c a l d i e t i c i a n , IV nurse c l i n i c i a n , and pharmacist. These three departments have also prepared a pat ient teaching manual. The object ives of the manual for the pat ient are l i s t e d as fo l lows. The pat ient should: 1. Understand the basic p r inc ip les of nu t r i t ion as i t re lates to parenteral nu t r i t i on at home, inc luding modes to deal with soc ia l s i tuat ions and food cravings. 2. Understand and demonstrate a l l steps necessary for admixture of solut ions in the home. 3 . Describe appropriate mechanisms for storage and disposal of equipment. 4. Describe and demonstrate basic p r inc ip les of asepsis as i t re lates to the care of the home parenteral nu t r i t i on system. 5. Describe each component of the HPN program and i t s re lated funct ion. 6. Operate an in fus ion pump and trouble-shoot any problem. 7. Understand and demonstrate da i ly monitoring procedures. 8. Describe appropriate means of preventing complications of HPN. - 45 -9. D e s c r i b e a p p r o p r i a t e management o f the p o t e n t i a l problems. 10. D e s c r i b e s i g n s and symptoms o f the pri m a r y i l l n e s s and i n d i c a t i o n s which r e q u i r e a d o c t o r ' s a t t e n t i o n . 11. U n d e r s t a n d t he f o l l o w - u p p r o c e d u r e s o f UBC H e a l t h S c i e n c e s C e n t r e H o s p i t a l (UBC HSC H o s p i t a l Home TPN Program I n f o r m a t i o n B o o k l e t , 1985). U n l i k e t he o t h e r Vancouver h o s p i t a l s , a c l i n i c a l d i e t i c i a n i s i n v o l v e d i n t e a c h i n g t he HPN p a t i e n t s . The r o l e o f t h i s d i e t i c i a n i s t o a s s e s s each p a t i e n t who may be c o n s i d e r e d f o r HPN. The assessment i n c l u d e s a h i s t o r y o f the p a t i e n t ' s w e i g h t , f o o d h a b i t s , f o o d a l l e r g i e s and a c t i v i t y l e v e l . A l s o , body measurements a r e used t o determine n u t r i t i o n a l s t a t u s . Based on t h i s i n f o r m a -t i o n and o t h e r d a t a p r o v i d e d by o t h e r h e a l t h p r o f e s s i o n a l s , an e s t i m a t i o n o f c a l o r i e and n u t r i e n t r e q u i r e m e n t s i s made. A f t e r t he i n i t i a t i o n o f the paren-t e r a l n u t r i t i o n i n h o s p i t a l , the d i e t i c i a n f o l l o w s the p a t i e n t ' s p r o g r e s s and makes recommendations as r e q u i r e d . A l s o c o v e r e d a r e ways t o deal w i t h s o c i a l s i t u a t i o n s such as b e i n g i n v i t e d out f o r d i n n e r and how to make the t r a n s i t i o n back t o o r a l n u t r i t i o n when and i f a p p r o p r i a t e . The p h a r m a c i s t ' s a r e a o f i n s t r u c t i o n i s s o l u t i o n p r e p a r a t i o n and a s e p t i c t e c h n i q u e p l u s s t o r a g e and s t a b i l i t y o f s o l u t i o n s . As a l l p a t i e n t s from UBC HSC H o s p i t a l r e c e i v e pre-mixed s o l u t i o n s , they a re r e q u i r e d o n l y t o add the n e c e s s a r y v i t a m i n s t o t h e i r s o l u t i o n s . T e a c h i n g i s t h e r e f o r e s i m p l i f i e d i n comparison w i t h o t h e r h o s p i t a l s a l r e a d y d i s c u s s e d . The IV nurse c l i n i c i a n t e a c h e s the p a t i e n t how t o manage the d a i l y HPN r o u t i n e i n c l u d i n g m o n i t o r i n g o f we i g h t , temperature and c a t h e t e r , d r e s s i n g changes, a t t a c h i n g IV t u b i n g t o s o l u t i o n s , the use o f the i n f u s i o n pump and d i s -c o n t i n u a t i o n o f the s o l u t i o n s . P o t e n t i a l c o m p l i c a t i o n s such as i n f e c t i o n , a i r - 46 -embolism, b l o c k e d c a t h e t e r s , broken c a t h e t e r s , f l u i d o v e r l o a d , b l e e d i n g , hypo-g l y c e m i a and d e f e c t i v e equipment are a l s o c o v e r e d . P a t i e n t s are i n s t r u c t e d how best t o p r e v e n t any o f t h e s e from o c c u r r i n g , and what t o do i f t h e y do o c c u r . F ollow-up c a r e p o s t - d i s c h a r g e i s c l e a r l y o u t l i n e d . P a t i e n t s a r e i n s t r u c t e d t o phone the g a s t r o e n t e r o l o g i s t on c a l l at t h e h o s p i t a l f o r any emergent problem. F u r t h e r , p a t i e n t s who l i v e i n t h e area are i n s t r u c t e d t o r e t u r n t o UBC HSC H o s p i t a l l a b o r a t o r y f o r r o u t i n e blood work. At t h i s t i m e , t h e y w i l l a l s o be seen by members o f t h e TPN team. The h o s p i t a l IV nurse c l i n i c i a n c o n t a c t s t h e p a t i e n t s on a r e g u l a r b a s i s a t home t o m o n i t o r p r o g r e s s and makes arrangements f o r home v i s i t s by t h e p r o v i d i n g company's nurse when n e c e s s a r y . The pharmacy s t a f f i s r e s p o n s i b l e f o r c o - o r d i n a t i o n o f the p r o v i s i o n o f and payment f o r a l l s o l u t i o n s , a d d i t i v e s , equipment and a n c i l l a r y s u p p l i e s t o t h e p a t i e n t . Pharmacy i s a l s o r e s p o n s i b l e f o r communicating any p r e s c r i p t i o n changes from t h e p h y s i c i a n t o t h e p r o v i d e r s . B.C. C h i l d r e n ' s H o s p i t a l The B.C. C h i l d r e n ' s H o s p i t a l has r e c e n t l y become i n v o l v e d w i t h home p a r e n t e r a l n u t r i t i o n , h a v i n g sent i t s f i r s t p a t i e n t , a 16 y e a r o l d Crohn's p a t i e n t , home i n A p r i l , 1986. S i n c e t h e n , 3 more teenage Crohn's p a t i e n t s have been t r a i n e d and s e n t home on HPN. Because t h e need f o r HPN was f e l t t o be so i m p o r t a n t , t h e s e p a t i e n t s were t r a i n e d b e f o r e a formal h o s p i t a l program was e s t a b l i s h e d . At p r e s e n t , t h e departments o f m e d i c i n e , n u r s i n g and pharmacy a r e working t o produce such a program. U n t i l t h i s i s done, t h e h o s p i t a l w i l l not be approved as a d e s i g n a t e d t e a c h i n g h o s p i t a l f o r HPN by the M i n i s t r y o f H e a l t h . - 47 -The pat ients , so f a r , have been trained to mix and administer the HPN solut ions and care for the i r central venous catheters by an intravenous nurse c l i n i c i a n . The supplies and pre-mixed solut ions have been provided by Travacare, KDS has provided the in fus ion pumps, and the Min is t ry of Health has assumed the costs of HPN for these ch i l d ren . At present, the departments of d ie te t i cs and social work are not involved. Follow-up of these patients has been at the hospital where each pat ient has been seen by the nurse c l i n i c i a n and phys ic ian. I t i s of in te res t that , to date, no c h i l d under the age of 16 has been placed on the program. There are, however, a number of younger chi ldren who have been receiv ing parenteral nu t r i t i on in the hospital for long periods of time. These pat ients may be considered for HPN in the future. Min is t ry of Health I t can be seen that the home parenteral nu t r i t ion s i tua t ion in B.C. i s , at present, fragmented with each hospital providing a d i f fe rent form of care for the i r pat ients . In an e f fo r t to a l l ev i a te some of the problems created by t h i s , a TPN nurse advisory committee to KDS has been formed. Members presently represent Vancouver General, S t . Pau l ' s and Chi ld ren 's hosp i ta l s , and KDS. The purpose of the committee i s : 1. To provide input into the care of c l i en t s maintained at home. 2. To ass i s t KDS in maintaining a cos t -e f fec t i ve service through standardizat ion of equipment and supplies and serv ices . 3. To provide feedback to KDS from c l i en t s on the TPN program regarding services and suppl ies . - 48 -A second p r o v i n c i a l a d v i s o r y committee has a l s o been formed. T h i s committee i s composed o f the chairman o f the h o s p i t a l n u t r i t i o n committees from S t . P a u l ' s , VGH, C h i l d r e n ' s , Kelowna General and V i c t o r i a General h o s p i t a l s , t he Vancouver Bureau p h a r m a c i s t , a d i e t i c i a n , an IV nurse c l i n i c i a n , and a r e p r e -s e n t a t i v e from KDS and H o s p i t a l Programs. T h i s committee's purpose i s t o s c r e e n a d m i s s i o n s o f p a t i e n t s to the program and t o examine s o l u t i o n s and p r o d u c t s a v a i l a b l e on the market. The committee d e a l s w i t h t h e s e c o n c e r n s and r e p o r t s t o the M e d i c a l A d v i s o r y Committee o f the M i n i s t r y o f H e a l t h i n V i c t o r i a . The m i n i s t r y i s p r e s e n t l y c o n s i d e r i n g c o n t r a c t i n g a l l HPN s e r v i c e s t o a p r i v a t e company and thus e l i m i n a t i n g KDS's r o l e i n d i s t r i b u t i n g s o l u t i o n s and s u p p l i e s . T h i s p o s s i b i l i t y would, o f c o u r s e , i n c r e a s e the o v e r a l l c o s t as p a t i e n t s would be s u p p l i e d w i t h a t l e a s t pre-mixed " c o r e " s o l u t i o n s . At the same ti m e , however, i t would s i m p l i f y and s t a n d a r d i z e the m i x i n g and d e l i v e r y o f HPN s o l u t i o n s and s u p p l i e s , e l i m i n a t i n g many problems i n t h i s a r e a . - 49 -CHAPTER 4: THE THESIS METHODOLOGY The type o f study p r e s e n t e d i s a descriptive analysis. Because home p a r e n t e r a l n u t r i t i o n i s a new area i n h e a l t h c a r e i n B.C., an e x p l o r a t o r y study o u t l i n i n g t h e b e n e f i t s and problems a s s o c i a t e d w i t h home p a r e n t e r a l n u t r i t i o n i n the p r o v i n c e was f e l t t o be most a p p r o p r i a t e . Due t o the l a c k o f any obv i o u s " c o n t r o l group", as w e l l as the l a c k o f i n f o r m a t i o n about HPN i n B.C., a co m p a r a t i v e e v a l u a t i o n p er se was not p o s s i b l e . However, a S e a t t l e study r e p o r t e d i n 1983 does a l l o w f o r some comparison (Robb, 1983). T h i s l a t t e r study examines the med i c a l and p s y c h o s o c i a l outcomes f o r a group o f HPN p a t i e n t s t r a i n e d t o s e l f a d m i n i s t e r p a r e n t e r a l n u t r i t i o n a t the U n i v e r s i t y H o s p i t a l , U n i v e r s i t y o f Washington, between 1972 and 1982. Data Sour c e s The d a t a s o u r c e s used f o r t he p r e s e n t study were: 1. Patient Questionnaire: T h i s q u e s t i o n n a i r e was m o d e l l e d on t h a t used by t h e S e a t t l e group (Robb, 1983). Many q u e s t i o n s were i d e n t i c a l t o thos e used i n S e a t t l e t o a l l o w f o r comparison o f r e s u l t s . Some q u e s t i o n s were a l t e r e d o r o m i t t e d , and o t h e r s were added t o r e f l e c t t h e s i t u a t i o n i n B.C. 2. Health Professional Questionnaire: T h i s q u e s t i o n n a i r e was co m p i l e d e s p e c i a l l y f o r and was s e n t t o h e a l t h c a r e workers i n B.C. i n the p a r e n t e r a l n u t r i t i o n f i e l d i n c l u d i n g p h y s i c i a n s , n u r s e s , p h a r m a c i s t s , d i e t i c i a n s and a d m i n i s t r a t o r s . - 50 -3. Patient Records: H o s p i t a l r e c o r d s from VGH, and C h i l d r e n ' s h o s p i t a l s were examined. 4. Other Professionals: D e s c r i p t i v e d a t a were g a t h e r e d from o t h e r p r o f e s s i o n a l s i n v o l v e d i n HPN i n c l u d i n g KDS, T r a v a c a r e , M i n i s t r y o f H e a l t h and h o s p i t a l employees. Method of Study The study methods were as f o l l o w s : 1. The P a t i e n t Q u e s t i o n n a i r e Any p a t i e n t who was c u r r e n t l y on home p a r e n t e r a l n u t r i t i o n i n B.C. a t the time o f data c o l l e c t i o n ( O c t o b e r 1986), o r who had been on the program a t any time i n the p a s t was a p o t e n t i a l r e c i p i e n t o f the p a t i e n t q u e s t i o n n a i r e . Due t o e t h i c a l r e q u i r e m e n t s , no p a t i e n t was c o n t a c t e d d i r e c t l y by the r e s e a r c h e r . Names o f w i l l i n g p a r t i c i p a n t s were o b t a i n e d from the p h y s i c i a n s i n v o l v e d i n c a r i n g f o r t h e s e p e o p l e . As a r e s u l t , 23 p a t i e n t names were p r o v i d e d t o the r e s e a r c h e r and the q u e s t i o n n a i r e was m a i l e d o r d e l i v e r e d i n person t o a l l o f t h e s e . 20 p a t i e n t s responded ( 8 7 % ) . One r e p l y was l o s t i n the mail f o r a net response r a t e o f 83%. 2. The H e a l t h P r o f e s s i o n a l Q u e s t i o n n a i r e T h i s q u e s t i o n n a i r e was s e n t t o a l l known h e a l t h p r o f e s s i o n a l s i n the p r o v i n c e c a r i n g f o r HPN p a t i e n t s o r i n v o l v e d i n the a d m i n i s t r a t i o n o f the HPN s e r v i c e . P r o f e s s i o n a l s i n c l u d e d p h y s i c i a n s , n u r s e s , - 51 -p h a r m a c i s t s , d i e t i c i a n s and a d m i n i s t r a t o r s . No s o c i a l workers or p s y c h i a t r i s t s were i n c l u d e d because none are c u r r e n t l y i n v o l v e d w i t h HPN i n the p r o v i n c e . 19 q u e s t i o n n a i r e s were s e n t , and 17 p r o f e s -s i o n a l s responded f o r a r e t u r n r a t e o f 89%. 3. C h a r t Data C h a r t d a t a f o r HPN p a t i e n t s were c o l l e c t e d from Vancouver General H o s p i t a l . However, because the p a t i e n t s were not f o l l o w e d by the h o s p i t a l on a r e g u l a r b a s i s as o u t p a t i e n t s , t h e s e d a t a were i n c o m p l e t e . As w e l l , the r e c o r d s o f c h i l d r e n who r e c e i v e d p a r e n t e r a l n u t r i t i o n a t C h i l d r e n ' s H o s p i t a l from J a n u a r y 1973 t o December 1985 were examined. 4. Other I n f o r m a t i o n O ther i n f o r m a t i o n r e g a r d i n g c o s t s o f HPN, the development o f the HPN program i n B.C., and the e x t e n t t o which HPN has been p r o v i d e d i n B.C. was g a t h e r e d from p r o f e s s i o n a l s working i n the f i e l d today o r a s s o c i a t e d w i t h i t i n the p a s t . The r e s u l t i n g d a t a were o r g a n i z e d t o p r o v i d e a d e s c r i p t i o n o f the c u r r e n t s e r v i c e i n B.C. R e s u l t s were t a b u l a t e d and a n a l y s i s done. However, o n l y minimal s t a t i s t i c a l a n a l y s i s o f the r e s u l t s was performed because o f the small sample s i z e . - 52 -CHAPTER 5: RESULTS OF THE STUDY PART 1: THE PATIENT QUESTIONNAIRE R e s u l t s A. P a t i e n t C h a r a c t e r i s t i c s The q u e s t i o n n a i r e was m a i l e d t o 23 p a t i e n t s , 19 o f whom responded, f o r a r e s p o n s e r a t e o f 83%. A l l p a t i e n t s had been on the program f o r a l e a s t 4 months and 1 person had been r e c e i v i n g HPN f o r more than 14 y e a r s . C u r r e n t p a t i e n t age ranged from 16 t o 56 y e a r s ( T a b l e 5-1), and averaged 34.4*. P a t i e n t c h a r a c t e r i s t i c s a r e d e s c r i b e d i n T a b l e 5-2. Nine p a t i e n t s were male, 10 were fe m a l e . Twelve p a t i e n t s were s i n g l e , 5 m a r r i e d and 2 d i v o r c e d . Three persons l i v e d a l o n e w h i l e the r e s t s h a r e d accommodation. Ten p a t i e n t s were l i v i n g i n the lower m a i n l a n d a r e a and 9 elsewhere i n the p r o v i n c e . More than h a l f o f the HPN p a t i e n t s were e i t h e r employed, homemakers o r s t u d e n t s . One person was unemployed and l o o k i n g f o r work, w h i l e 8 were p h y s i c a l l y d i s a b l e d and t h e r e f o r e not e m p l o y a b l e . F o r the most p a r t , the p a t i e n t s were w e l l e d u c a t e d . A l l but one had completed h i g h s c h o o l , 11 had a t l e a s t some p o s t h i g h s c h o o l t r a i n i n g and one p e r s o n had a u n i v e r s i t y degree. Respondents t o the q u e s t i o n -n a i r e were asked t o l i s t a l l s o u r c e s o f f a m i l y income. E l e v e n p e o p l e had income * Note t h a t T a b l e s 5-1 t o 5-11 a l s o c o n t a i n d a t a r e l a t i n g t o the S e a t t l e study done by Robb (Robb, 1983). S p e c i f i c r e f e r e n c e w i l l be made t o t h i s data l a t e r i n t h i s c h a p t e r . - 53 -a t l e a s t p a r t l y e a r n e d , w h i l e a n o t h e r 11 f a m i l i e s r e l i e d on a p e n s i o n , w e l f a r e o r unemployment i n s u r a n c e . The p r i m a r y d i a g n o s i s , o r the r e a s o n f o r HPN t h e r a p y , v a r i e d . E l e v e n p e o p l e had Crohn's d i s e a s e , 2 had r a d i a t i o n e n t e r i t i s , and 4 had had a c u t e g a s t r o - i n t e s t i n a l e p i s o d e s r e s u l t i n g i n massive s u r g e r y . Only one person was o v e r w e i g h t as d e t e r m i n e d by s t a n d a r d c l a s s i f i c a t i o n s a c c o r d i n g t o h e i g h t (B.C. D i e t Manual, 3 r d E d i t i o n , 1984). Ten persons f e l l w i t h i n the i d e a l range, and 8 were 10% o r more below the m i d - p o i n t o f the i d e a l range. T a b l e 5-1. P a t i e n t C h a r a c t e r i s t i c s and HPN Therapy C h a r a c t e r i s t i c S e a t t l e 9 Range Mean Age ( y e a r s ) Length o f time on Program ( y e a r s ) No. o f I n f u s i o n s per week 22-78 0.5-9.5 2-7 50.1 3.6 5.3 a. F o r d i s c u s s i o n , see page 75. - 54 -T a b l e 5-2. P a t i e n t C h a r a c t e r i s t i c s C h a r a c t e r i s t i c B • C. Sea t t l e a # o f P t . % # o f P t . % Number o f p a t i e n t s 19 42 Mai es 9 47 14 33 Females 10 53 28 67 M a r i t a l S t a t u s S i n g l e 12 63 10 24 M a r r i e d 5 26 24 57 D i v o r c e d 2 11 3 7 Widowed 0 0 5 12 L i v i n g S t a t u s Al one 3 16 12 29 Shared 16 84 29 69 Extended Care F a c i l i t y 0 0 1 2 L i v i n g S i t u a t i o n Lower M a i n l a n d 10 53 O u t s i d e Lower M a i n l a n d 9 47 Employment S t a t u s Employed 4 21 5 12 Homemaker 3 16 4 10 S t u d e n t 3 16 0 Unemployed 1 5 15 36 P h y s i c a l l y D i s a b l e d 8 42 11 26 R e t i r e d 0 7 17 - 55 -T a b l e 5-2 ( C o n t i n u e d ) C h a r a c t e r i s t i c B.C. S e a t t l e 9 # o f P t . # o f P t . F a m i l y Income Earned P e n s i o n Welfare/UIC Other E d u c a t i o n E l e m e n t a r y School High School P o s t High School T r a i n i n g U n i v e r s i t y Degree D i a g n o s i s Crohn's D i s e a s e R a d i a t i o n E n t e r i t i s Acute G.I. E p i s o d e Other Not I n d i c a t e d I d e a l Weight 10-40% Above Ide a l Range (+10% t o -10%) 10-20% Below 20-30% Below More than 30% Below 11 9 2 1 1 6 11 1 11 2 4 1 1 1 10 4 2 2 58 47 11 5 5 32 58 5 58 11 21 5 5 5 53 21 11 11 a. F o r d i s c u s s i o n , see page 75. - 56 -B. HPN Therapy T h i r t e e n o f the 19 p a t i e n t s were r e c e i v i n g HPN a t the time o f data c o l l e c -t i o n ( O c t o b e r 1986), 4 had d i s c o n t i n u e d HPN t h e r a p y i n the p r e v i o u s 6 months and 2 had d i s c o n t i n u e d t h e r a p y i n 1985. The t o t a l time on HPN t h e r a p y r e p o r t e d by t h e s e p a t i e n t s was 69.3 y e a r s . P a t i e n t s i n f u s e d n u t r i e n t s o l u t i o n s 3 t o 7 days per week w i t h the mean number o f times b e i n g 6.4. Those p a t i e n t s who i n f u s e d l e s s than 7 days per week were a b l e t o consume some f o o d o r a l l y on the days they d i d n o t run p a r e n t e r a l n u t r i t i o n . S i x t e e n p a t i e n t s had i n t r a v e n o u s a c c e s s v i a a c e n t r a l venous c a t h e t e r , T a b l e 5-3. Three p a t i e n t s had PTFE g r a f t s . Most o f the p a t i e n t s had been t r a i n e d a t S t . P a u l ' s o r Vancouver G e n e r a l H o s p i t a l , w i t h one each t r a i n e d a t t h e UBC H e a l t h S c i e n c e s C e n t r e H o s p i t a l and the C h i l d r e n ' s H o s p i t a l . S i x p e o p l e r e c e i v e d c o m p l e t e l y mixed s o l u t i o n s and were o n l y r e q u i r e d t o add v i t a m i n s , 4 r e c e i v e d c o r e s o l u t i o n s n e c e s s i t a t i n g them t o add e l e c t r o l y t e s and v i t a m i n s , and 9 had t o c o m p l e t e l y mix t h e i r own s o l u t i o n s . T o t a l time r e p o r t e d f o r p r e p a r a t i o n and a d m i n i s t r a t i o n o f s o l u t i o n s ranged from 22 t o 119 hours p e r week, w i t h the mean v a l u e 74.4 h o u r s . Most o f t h i s time was spent a d m i n i s t e r i n g s o l u t i o n s . P r e p a r a t i o n time per HPN day ranged from 15 minutes t o 2 h o u r s , w i t h the average b e i n g 50 m i n u t e s . Compliance w i t h the program seemed v e r y good. Only 2 p e r s o n s a d m i t t e d t o m i s s i n g more than one i n f u s i o n per week. One o t h e r d i d not r e s p o n d . A l l but 2 p a t i e n t s had r o u t i n e b l o o d work done t o m o n i t o r t h e i r p r o g r e s s . - 57 -T a b l e 5-3. C h a r a c t e r i s t i c s of HPN Therapy C h a r a c t e r i s t i c B.C. # o f Pt. S e a t t l e 3 # o f P t . % I.V. Access C e n t r a l C a t h e t e r G r a f t 16 3 84 16 42 0 100 0 T r a i n e d VGH S t . P a u l ' s UBC HSCH C h i l d r e n ' s 5 12 1 1 26 63 5 5 HPN S o l u t i o n s T o t a l Mix Core Not-Premixed 6 4 9 32 21 47 0 0 42 0 0 100 T o t a l Time t o P r e p a r e and A d m i n i s t e r S o l u t i o n (hours p e r week) Le s s than 40 40-65 65-90 More than 90 1 6 6 6 5 32 32 32 R o u t i n e B l o o d Work Yes No 17 2 90 11 42 0 100 0 S k i p p e d I n f u s i o n s Never 1-2 p e r Month 1 per Week More than 1 p e r Week No Response 8 8 0 2 1 42 42 11 5 17 13 7 3 2 41 31 17 7 5 a. F o r d i s c u s s i o n , see page 76. - 58 -C. C l i n i c a l Data C l i n i c a l d a t a a r e t a b u l a t e d i n T a b l e 5-4, T a b l e 5-5 and T a b l e 5-6. H o s p i t a l a d m i s s i o n s per person f o r the y e a r p r i o r to the data c o l l e c t i o n , or the l a s t y e a r o f HPN t h e r a p y f o r p e o p l e no l o n g e r on the program, ranged from 0 t o 3 ad m i s s i o n s , w i t h the mean b e i n g 1.3 ( T a b l e 5-4). A t o t a l o f 25 a d m i s s i o n s were r e p o r t e d by 16 p a t i e n t s . Three p e o p l e had no h o s p i t a l a d m i s s i o n s i n the y e a r . T o t a l h o s p i t a l i z e d days per p a t i e n t f o r the y e a r , ranged from 0 to 64 days, w i t h a mean o f 11.7 days, o r a p p r o x i m a t e l y 3% o f the y e a r ( T a b l e 5-4). Of the t o t a l 25 a d m i s s i o n s , 13 appeared t o be r e l a t e d t o the HPN t h e r a p y and o f t h e s e , 10 were due t o c a t h e t e r problems, m a i n l y i n f e c t i o n . The average h o s p i t a l s t a y f o r t h e s e a d m i s s i o n s was 9.7 days. The 16 p a t i e n t s w i t h c e n t r a l venous c a t h e t e r s had on average 2.1 c a t h e t e r s . T w e n t y - f i v e p a t i e n t c a t h e t e r s were removed w i t h an average l i f e span of 15.1 months. The r e a s o n f o r removal o f the c a t h e t e r i n o v e r h a l f o f the c a s e s was i n f e c t i o n ( T a b l e 5-5). The next most common causes o f removal were c l o t s ( 2 0 % ) , and t e r m i n a t i o n o f HPN ( 1 6 % ) . Seven o f the 16 p a t i e n t s w i t h c e n t r a l venous c a t h e t e r s had no c a t h e t e r c o m p l a i n t s a t a l l . T a b l e 5-6 l i s t s p h y s i o l o g i c a l compla in t s e x p e r i e n c e d by the p a t i e n t s . C o m p l a i n t s were r a t e d as f r e q u e n t , i n f r e q u e n t o r never. The number o f f requent c o m p l a i n t s a r e t a b u l a t e d s e p a r a t e l y w h i l e the i n f r e q u e n t and never r e s p o n s e s a r e a g g r e g a t e d . I n f o r m a t i o n r e g a r d i n g B.C. p a t i e n t s was a l s o t a b u l a t e d t o show the number o f p a t i e n t s who had frequent, c o m p l a i n t s o n l y before HPN, on ly a f t e r beg inn ing HPN, and t h o s e who had c o m p l a i n t s both before and a f t e r HPN. The most common c o m p l a i n t c i t e d a f t e r HPN was f r e q u e n t u r i n a t i o n w h i l e i n f u s i n g . T h i s , o f c o u r s e , was due to the l a r g e volume o f - 59 -T a b l e 5-4. C l i n i c a l Data B .C. S e a t t l e b Range Mean Range Mean H o s p i t a l A d m i s s i o n s 0-3 1.3 0-7 1.6 T o t a l H o s p i t a l i z e d Days/Pt/Yr 0-64 11.7 Length o f H o s p i t a l S t a y (Days) 1-30 10.6 1-60 12.1 HPN r e l a t e d 1-30 9.7 1-27 11.7 HPN u n r e l a t e d 4-20 11.6 1-60 12.9 C a t h e t e r r e l a t e d 1-30 9.7 1-60 14.0 C a t h e t e r u n r e l a t e d 4-20 11.4 4-21 8.6 L i f e o f Removed C a t h e t e r s 0.1-48 15.1 mon. 21.8 mon. months 3 # o f C a t h e t e r s p er P t . 1-6 2.1 1-21 2.4 a. 4 c a t h e t e r s removed because o f t e r m i n a t i o n o f HPN. b. F or d i s c u s s i o n , see page 76. T a b l e 5-5. Reason f o r C a t h e t e r Removal Reason B.C. N=25 # I n f e c t i o n 13 C l o t s 5 P o s i t i o n a l / P h y s i c a l Problem 2 Unknown 1 T e r m i n a t i o n o f HPN 4 P t . w i t h No C o m p l a i n t s 7 3 S e a t t l e N=29^ # 52 20 8 4 16 44 19 7 1 2 0 2 0 b 66 24 4 7 0 48 a. N=16 b. N=42 c. F o r d i s c u s s i o n , see page 76. - 60 -T a b l e 5-6. P h y s i o l o g i c a l C o m p l a i n t s B .C. S e a t t l e 5 C o m p l a i n t F r e q u e n t I n f r e q u e n t o r Never Never # o f P t % B e f o r e HPN ( o n l y ) # o f P t % A f t e r HPN ( o n l y ) # o f P t % B e f o r e & A f t e r % % Cramping i n Hands and F e e t 1 5 4 21 4 21 53 33 Loss o f H a i r 0 0 1 5 0 0 95 67 Bone o r J o i n t P a i n 0 0 6 32 2 11 58 40/52 a Dry S c a l y S k i n 0 0 4 21 2 11 68 52 S k i n Rashes 0 0 2 11 1 5 84 83 Ankle & F e e t Swel1i ng 3 16 3 16 2 11 58 48 S h o r t n e s s o f B r e a t h w h i l e I n f u s i n g - 1 5 - - 95 86 G e n e r a l i z e d Weakness 6 32 4 21 2 11 37 52 E p i s o d e s o f Nervousness 2 11 1 5 1 5 79 62 F r e q u e n t U r i n a t i o n w h i l e I n f u s i n g - - 12 63 - - 37 45 E p i s o d e s o f D i z z i n e s s when S t a n d i n g 1 5 3 16 3 16 63 71 a. Never c o m p l a i n e d o f j o i n t p a i n 40%. Never c o m p l a i n e d o f bone p a i n 52%. b. F o r d i s c u s s i o n , see page 76. - 61 -l i q u i d i n f u s e d d u r i n g t h i s t ime. Another f r e q u e n t c o m p l a i n t r e p o r t e d a f t e r b e g i n n i n g HPN was g e n e r a l i z e d weakness. I t i s , however, i n t e r e s t i n g t o note t h a t fewer p a t i e n t s c o m p l a i n e d o f weakness a f t e r b e g i n n i n g HPN than d i d b e f o r e s t a r t i n g . From t h i s r e s t r i c t e d d a t a , one cannot draw d e f i n i t e c o n c l u s i o n s . N e v e r t h e l e s s , i t i s l i k e l y t h a t t h i s i s an i n d i c a t i o n o f improved n u t r i t i o n a l s t a t u s f o l l o w i n g the commencement o f the p a r e n t e r a l n u t r i t i o n . The o n l y o t h e r symptom t h a t showed a d e c r e a s e d f r e q u e n c y a f t e r s t a r t i n g HPN was e p i s o d e s o f n e r v o u s n e s s . Symptoms t h a t i n c r e a s e d most rem a r k a b l y a f t e r s t a r t i n g HPN, o t h e r than f r e q u e n t u r i n a t i o n a t n i g h t , were cramping i n the hands and f e e t , bone and j o i n t p a i n , dry s c a l y s k i n , and e p i s o d e s o f d i z z i n e s s . A g a i n , g i v e n the l i m i t a t i o n on p r e s e n t l y a v a i l a b l e d a t a , i t i s not p o s s i b l e t o a t t r i b u t e t h e s e symptoms t o the i n t r o d u c t i o n o f HPN. In some c a s e s , f o r example, the p r i m a r y d i s e a s e o r m e d i c a t i o n s taken by the p a t i e n t may c o n t r i b u t e . N e v e r t h e l e s s , t h e s e symptoms may be i n d i c a t i o n s o f m e t a b o l i c c o m p l i c a t i o n s o f t o t a l p a r e n t e r a l n u t r i t i o n . F o r example, d i z z i n e s s when s t a n d i n g , e s p e c i a l l y i f o c c u r r i n g soon a f t e r c e s s a t i o n o f a h i g h g l u c o s e s o l u t i o n , may be due t o rebound hypoglycemia as a r e s u l t o f s t i m u l a t e d endogenous i n s u l i n s e c r e t i o n . A gradual s l o w i n g o f the i n f u s i o n r a t e one t o two hours b e f o r e the c o n c l u s i o n o f the i n f u s i o n can p r e v e n t t h i s ( L a d e f o g e d , 1985). The s c a l y s k i n r e p o r t e d may be a s s o c i a t e d w i t h e s s e n t i a l f a t t y a c i d d e f i c i e n c y . Cramping i n the hands and f e e t can be due t o e l e c t r o l y t e d e f i c i e n c y and bone o r j o i n t p a i n may be a s s o c i a t e d w i t h bone d i s e a s e due t o p a r e n t e r a l n u t r i t i o n . In T a b l e 5-7, o t h e r p h y s i o l o g i c a l symptoms e x p e r i e n c e d by the p a t i e n t s have been grouped as "symptoms a s s o c i a t e d w i t h i n f u s i o n o f f a t e m u l s i o n " . However, i t s h o u l d be c l e a r t h a t t h e s e c o m p l a i n t s can a l s o be p r e c i p i t a t e d by many o t h e r - 62 -T a b l e 5-7. Symptoms A s s o c i a t e d w i t h I n f u s i o n o f F a t E m u l s i o n 8 B.C. (N=19) S e a t t l e 0 (N =27) Co m p l a i n t F r e q u e n t # o f P t . % I n f r e q u e n t o r # o f P t . Never % Complained # o f P t . % D i a r r h e a " 9 50 9 50 7 26 Nausea 7 37 12 63 10 37 S h o r t n e s s o f B r e a t h 0 0 19 100 3 11 Pounding C h e s t 0 0 19 100 5 19 Unusual T a s t e 5 5 28 13 72 14 52 Abdominal Cramps 4 21 15 79 5 19 a. These symptoms a r e not o n l y a s s o c i a t e d w i t h i n f u s i o n o f f a t e m u l s i o n s . b. N = 18 c. F o r d i s c u s s i o n o f t h e s e r e s u l t s , see page 77. - 63 -f a c t o r s . F o r example, d i a r r h e a i s a common problem c i t e d by the HPN p a t i e n t s ( 5 0 % ) , a l l o f whom i n f u s e f a t e m u l s i o n s . However, the p r i m a r y cause o f the d i a r r h e a i s l i k e l y n ot the f a t s o l u t i o n s , but r a t h e r the c o n d i t i o n of the g a s t r o - i n t e s t i n a l t r a c t i t s e l f , o r a r e s u l t o f o r a l i n g e s t i o n o f f o o d s . Nausea (37%) and abdominal cramps (28%) are o t h e r n o n - s p e c i f i c c o m p l a i n t s . Unusual t a s t e (28%) i s , however, l i k e l y due t o the f a t e m u l s i o n . S h o r t n e s s o f b r e a t h and pounding c h e s t were not problems f o r t h i s group. D. P s y c h o s o c i a l E f f e c t s T a b l e 5-8 summarizes some o f the s o c i a l e f f e c t s e x p e r i e n c e d by the p a t i e n t s . Each person was asked t o i n d i c a t e whether HPN i n t e r f e r e d w i t h a number o f usual a c t i v i t i e s , w i t h the degree o f i n t e r f e r e n c e r a t e d as none, moderate o r s e v e r e . A d e s c r i p t i o n o f t h e s e r e s u l t s f o l l o w s : N e a r l y 80% o f p a t i e n t s c o m p l a i n e d o f moderate o r s e v e r e d i s r u p t i o n o f s l e e p f o l l o w i n g HPN i n t r o d u c t i o n . Most o f t h i s was due t o f r e q u e n t u r i n a -t i o n d u r i n g the n i g h t , a l t h o u g h t h e r e were a l s o f o u r c o m p l a i n t s o f s l e e p d i s t u r b a n c e due t o the t u b i n g , equipment n o i s e , o r t o worry about equipment m a l f u n c t i o n . I n t e r f e r e n c e w i t h t r a v e l was a l s o a common c o m p l a i n t , w i t h 90% o f re s p o n d e n t s l i s t i n g i t . The reason f o r the i n t e r f e r e n c e was m a i n l y the l o g i s -t i c s o f t r a n s p o r t i n g v e r y l a r g e volumes o f f l u i d s and s u p p l i e s t o a g i v e n d e s t i n a t i o n . One p e r s o n , however, d i d mention t h a t T r a v a c a r e had a r r a n g e d t r a n s p o r t o f s o l u t i o n s and s u p p l i e s on one o c c a s i o n . Some o t h e r s found t h a t too much p r e p a r a t i o n time was needed t o be a b l e t o t r a v e l and s t i l l o t h e r s were r e s t r i c t e d i n the amount o f t r a v e l they c o u l d do by the number o f days they - 64 -T a b l e 5-8. I n t e r f e r e n c e w i t h A c t i v i t y B.C. S e a t t l e " A c t i v i t y I None # o f Pt % n t e r f e r e n c e Moderate # o f Pt % Severe # o f Pt % P t . w i t h C o m p l a i n t Moderate o r S e v e r e % P t . w i t h C o m p l aint % S l e e p 4 21 6 32 9 47 79 53 T r a v e l 2 11 11 58 6 32 90 50 Sex L i f e 1 2 a 63 3 16 4 21 37 19 E x e r c i se 8 42 9 47 2 11 58 25 L e i s u r e Time o r 5 Community A c t i v i t i e s 26 9 47 5 26 74 33/29^ M a r i t a l R e l a t i o n s 5 5 100 0 0 0 0 0 17 F a m i l y & S o c i a l L i f e c 6 33 10 56 2 11 67 5/439 R e l i g i o u s A c t i v i t y d 15 94 0 0 1 6 6 14 Work e 6 60 4 40 0 0 40 -a. None o r do not have a sex l i f e . b. Not a p p l i c a b l e f o r 14 m a r r i e d p a t i e n t s . c. N = 18 d. Not a p p l i c a b l e f o r 3 p a t i e n t s . e. Not a p p l i c a b l e f o r 9 unemployed p a t i e n t s . f . L e i s u r e time 33%, community f u n c t i o n s 29%. g. F a m i l y l i f e 5%, s o c i a l l i f e 43%. h. F o r d i s c u s s i o n , see page 78. - 65 -c o u l d manage w i t h o u t p a r e n t e r a l n u t r i t i o n . Most p a t i e n t (63%) r e p o r t e d no i n t e r f e r e n c e w i t h sex l i f e . However, t h i s f i g u r e i n c l u d e s some who had no such r e l a t i o n s h i p . Examples o f the i n t e r f e r e n c e r e p o r t e d were f e e l i n g s o f s e l f - c o n s c i o u s n e s s about the c a t h e t e r , and a l a c k o f time t o e s t a b l i s h sexual r e l a t i o n s h i p s . Two people r e p o r t e d t h a t they were s a t i s f i e d w i t h t h e i r sex l i f e . 58% o f r e s p o n d e n t s found HPN i n t e r f e r e d w i t h exercise, but o n l y 11% r a t e d i t s e v e r e . F o u r p e o p l e c u r t a i l e d e x e r c i s e because o f poor h e a l t h or l a c k o f e nergy. O t h e r s a l t e r e d t h e i r p h y s i c a l a c t i v i t i e s by g i v i n g up swimming and c o n t a c t s p o r t s , and becoming i n v o l v e d i n s t e a d w i t h a c t i v i t i e s such as h i k i n g , s k i i n g o r c u r l i n g . One p e r s o n ' s e x e r c i s e a c t i v i t i e s i n c r e a s e d from pre HPN times because o f an i n c r e a s e d energy l e v e l once e s t a b l i s h e d on the t h e r a p y . Most p e o p l e , 74%, r e p o r t e d HPN i n t e r f e r e d w i t h leisure time and community ac t i v i t i e s , and the overwhelming r e a s o n f o r t h i s appeared t o be l a c k o f t i m e . Some r e p o r t e d t h a t HPN r e s t r i c t e d t h e i r e v e n i n g s and t h u s , t h i s type o f a c t i v i t y . One p e r s o n found t h a t due t o p e r i o d i c i l l n e s s e s , b e i n g a " l e a d e r " i n community programs was not p r a c t i c a l and, t h e r e f o r e , became a " h e l p e r " i n s t e a d . O t h e r s found l e i s u r e a c t i v i t i e s r e s t r i c t e d because HPN d i d not a l l o w them t o be away from home f o r more than one n i g h t a t a t i m e . Of t h e f i v e p e r s o n s who were m a r r i e d , none f e l t t h a t t h e i r marital relations s u f f e r e d . One p e r s o n r e p o r t e d a v e r y good r e l a t i o n s h i p and a n o t h e r t h a t the r e l a t i o n s h i p had improved s i n c e s t a r t i n g on HPN. T w o - t h i r d s o f r e s p o n d e n t s found HPN i n t e r f e r e d w i t h t h e i r family and social l i f e . A g a i n , the time commitment t o HPN seemed t o be the major problem. Four p e o p l e found t h a t b e i n g unable t o e a t made them f e e l - 66 -u n c o m f o r t a b l e i n many s o c i a l s i t u a t i o n s . Two f e l t " d i f f e r e n t " and one person d e s c r i b e d e a t i n g i n o r d e r t o " f i t i n " d e s p i t e knowledge o f the p a i n t h a t would s u b s e q u e n t l y be e x p e r i e n c e d as a r e s u l t . Another r e p o r t e d t h a t h i s f r i e n d s were a l l a f r a i d o f HPN t h e r a p y . Only one p e r s o n d e s c r i b e d an i n c r e a s e i n s o c i a l i z i n g due t o a d e c r e a s e i n f r e q u e n c y o f p a i n and i n t e s t i n a l d i s c o m f o r t . R e l i g i o u s a c t i v i t i e s were r e s t r i c t e d i n j u s t one c a s e . However, 3 pe o p l e s t a t e d t h a t t h i s q u e s t i o n d i d not a p p l y t o them because they were not i n v o l v e d i n r e l i g i o u s a c t i v i t i e s . T h i s may a l s o be t r u e f o r o t h e r s who r e p o r t e d no i n t e r f e r e n c e . Four o f t e n p a t i e n t s who worked e i t h e r as wage e a r n e r s , s t u d e n t s , o r homemakers found HPN caused a moderate degree o f i n t e r f e r e n c e , but none r e p o r t e d s e v e r e i n t e r f e r e n c e . One p e r s o n r e a r r a n g e d n i g h t s on HPN a c c o r d i n g t o the employer's work s c h e d u l e and a n o t h e r p e r s o n found t h a t an e a r l y morning s t a r t meant the p a r e n t e r a l n u t r i t i o n s o l u t i o n s were not always f u l l y run i n . A f u r t h e r r e s p o n d e n t r e p o r t e d m i s s i n g a s i g n i f i c a n t amount o f time from work because o f l i n e i n f e c t i o n s . T a b l e 5-9 shows p a t i e n t employment s t a t u s pre and p o s t HPN. Reviewing t h i s data i n d i c a t e s t h a t 3 p e o p l e (Pt.#4,5 & 15) were a b l e t o improve t h e i r working s t a t u s p o s t HPN. P a t i e n t #15, who had been d i s a b l e d and u n a b l e t o work b e f o r e HPN, was so much h e a l t h i e r t h a t f u l l - t i m e employment as a s h i p p e r became p o s s i b l e . Two o t h e r s (Pt.#4 & 5) were a b l e t o i n c r e a s e t h e i r employment s t a t u s to f u l l - t i m e from p a r t - t i m e a f t e r HPN was e s t a b l i s h e d . Seven persons showed no change i n employment s t a t u s w h i l e the r e m a i n i n g n i n e had a n e g a t i v e change. F i v e o f t h i s l a t t e r group ( P t . #1,3,9,11 & 18) had been f u l l - t i m e wage e a r n e r s b e f o r e HPN t h e r a p y and were unemployed a f t e r . Only one o f t h e s e (Pt.#3) was - 67 -T a b l e 5-9. P a t i e n t Employment S t a t u s Pre and P o s t HPN P t . # O c c u p a t i o n Pre HPN Time a O c c u p a t i o n P o s t HPN Time Change Reason 1. Dental A s s i s t a n t FT Unemployed - P h y s i c a l l y Unable 2. Housewife/Mother FT Housewife/ Mother FT No 3. S e c r e t a r y FT Unemployed - L o o k i n g f o r Work 4. S t u d e n t / D i s a b l e d PT Handyman FT + Can w o r k / H e a l t h i e r 5. S a l e s PT S a l e s FT + Can w o r k / H e a l t h i e r 6. S t u d e n t Unemployed - P h y s i c a l l y Unable 7. Homemaker FT Homemaker FT No 8. Bookkeeper PT Unemployed - P h y s i c a l l y Unable 9. O p t i c a l T e c h n i c i a n FT Unemployed - P h y s i c a l l y Unable 10. D i s a b l e d Unemployed No 11. Boi1ermaker/Welder FT Unemployed - P h y s i c a l l y Unable 12. S t u d e n t FT S t u d e n t PT -13. Di s a b l e d Unemployed No P h y s i c a l l y Unable 14. S t u d e n t FT S t u d e n t FT No 15. D i s a b l e d S h i p p e r FT + Can w o r k / H e a l t h i e r 16. P r o f e s s o r FT P r o f e s s o r FT No 17. S t u d e n t FT S t u d e n t FT No 18. C l e r k FT Unemployed - P h y s i c a l l y Unable 19. Nurse PT Housewife - P h y s i c a l l y Unable a. FT = F u l l Time, PT = P a r t Time - 68 -l o o k i n g f o r work. The o t h e r 4 were p h y s i c a l l y unable to work. One s t u d e n t (Pt.#6) b e f o r e HPN, became unemployed a f t e r b e g i n n i n g HPN due t o p h y s i c a l i n a b i l i t y to work. Two o t h e r p e o p l e (Pt.#8 & 19 ) , gave up p a r t - t i m e employment a f t e r s t a r t i n g on HPN, and one s t u d e n t (Pt.#12), s u b s t i t u t e d f u l l - t i m e study w i t h p a r t - t i m e . T a b l e 5-10 d e s c r i b e s f u r t h e r s o c i a l c h a r a c t e r i s t i c s o f the HPN p a t i e n t s . Twelve p e o p l e were s t i l l able to eat a t l e a s t small amounts o f f o o d o r a l l y and thus p a r t i c i p a t e more e a s i l y w i t h the s o c i a l time meals p r o v i d e f a m i l y and f r i e n d s . Seven p e o p l e were not a b l e t o consume any f o o d by mouth. Three o f t h e s e p e o p l e , however, were i n v o l v e d w i t h meal p r e p a r a t i o n , one o f whom had become a c t i v e o n l y s i n c e b e g i n n i n g HPN t h e r a p y . I t i s i n t e r e s t i n g t h a t 4 o f t h e s e 7 were s t i l l p r e s e n t a t f a m i l y m e a l t i m e s . The o t h e r 3 p a t i e n t s removed themselves from t h a t s o c i a l s i t u a t i o n . The HPN p a t i e n t s were q u e s t i o n e d about t h e i r family's and friends' d i f f i c u l t y in accepting the HPN t h e r a p y . Only 3 p e o p l e found t h a t i n i t i a l l y t h e i r f a m i l y had had d i f f i c u l t y . These p e o p l e r e p o r t e d t h a t f a m i l y members f a i l e d t o r e a l i z e t h e s e r i o u s n e s s o f t h e i r m edical c o n d i t i o n and, f o r example, would o f f e r f o o d d e s p i t e knowledge o f the p a t i e n t ' s i n a b i l i t y t o e a t i t . One p e r s o n r e p o r t e d a s i b l i n g ' s i n a b i l i t y t o watch the i n f u s i o n o f the n u t r i e n t s o l u t i o n s . More p e o p l e found t h a t t h e i r f r i e n d s had d i f f i c u l t y a c c e p t i n g the s i t u a t i o n . Four f o u n d t h i s a problem o n l y i n i t i a l l y , and a n o t h e r 4 found i t a c o n t i n u a l problem. Three p a t i e n t s s t a t e d t h a t they d i d n ' t t e l l many o f t h e i r f r i e n d s and two o t h e r s f e l t t h a t t h e i r r e l a t i o n s h i p w i t h t h e i r f r i e n d s a l t e r e d . S e v e r a l p e o p l e r e p o r t e d t h a t t h e i r f r i e n d s were unable t o u n d e r s t a n d t h e i r i n a b i l i t y t o e a t o r the l a c k o f time they had f o r s o c i a l o c c a s i o n s . On the - 69 -T a b l e 5-10. S o c i a l C h a r a c t e r i s t i c s o f HPN P a t i e n t s C h a r a c t e r i s t i c Yes # o f P t . % No # o f P t . % A b i l i t y t o e a t o r a l l y 12 63 7 37 F a m i l y had d i f f i c u l t y a c c e p t i n g i n i t i a l l y 3 16 16 84 Other f a m i l y members' l i v e s changed 9 47 10 53 Met o t h e r HPN p a t i e n t s 14 74 5 26 F r i e n d s had d i f f i c u l t y a c c e p t i n g 8a 42 11 58 C o n t i n u i n g c o n t a c t w i t h HPN p a t i e n t s * 5 8 57 6 43 Sees h e a l t h p r o f e s s i o n a l s r e g u l a r l y 18 95 1 5 S p e c i a l i s t d o c t o r 16 84 3 16 General p r a c t i t i o n e r 7 37 12 63 Nurse 2 11 17 90 Pharmaci s t 1 5 18 95 F i n a n c i a l c o s t i n c u r r e d 11 58 8 42 F a m i l y h e l p Emotional 11 58 P r e p a r a t i o n and a d m i n i s t r a t i o n 8 42 None 3 16 a. 4 d i f f i c u l t y i n i t i a l l y , 4 d i f f i c u l t y c o n t i n u a l l y b. N = 14 - 70 -o t h e r hand, 3 pe o p l e mentioned the p o s i t i v e way f r i e n d s had responded. Nine o f the 19 r e s p o n d e n t s f e l t t h a t t h e i r families' lives had changed because o f t h e i r HPN t h e r a p y . Three peo p l e wrote t h a t o t h e r f a m i l y members took on housekeeping r o l e s such as c o o k i n g , c l e a n i n g and c h i l d c a r e f o r m e r l y done by the p a t i e n t . Three more peop l e s a i d t h a t f a m i l y members took time out o f t h e i r day t o h e l p mix s o l u t i o n s and 2 s a i d t h a t f a m i l y h o l i d a y s o r s o c i a l a c t i v i t i e s were r e a r r a n g e d t o accommodate the p a t i e n t . One person r e p o r t e d t h a t the pump n o i s e i n t e r f e r e d w i t h t h e s l e e p o f h i s spouse. P a t i e n t s were a l s o asked how family members specifically helped them. Three responded t h a t they r e c e i v e d no f a m i l y h e l p , 8 t h a t they r e c e i v e d a s s i s -t a n c e i n p r e p a r a t i o n o r a d m i n i s t r a t i o n o f s o l u t i o n s , and 11 t h a t they were g i v e n emotional s u p p o r t . F o u r t e e n r e s p o n d e n t s had met other HPN patients. E i g h t c o n t i n u e d c o n t a c t w i t h t h e s e p e o p l e and f e l t t h a t the r e l a t i o n s h i p was i m p o r t a n t to them. Reasons f o r t h i s i m p o r t a n c e i n c l u d e d t h e a b i l i t y t o d i s c u s s and s o l v e problems o f both p h y s i c a l and emo t i o n a l n a t u r e s , knowing a person who c o u l d r e l a t e to the medi c a l problems and moral s u p p o r t . I t i s i n t e r e s t i n g t h a t i n r e c e n t y e a r s , a number o f HPN p a t i e n t s i n the lower m a i n l a n d have formed an i n f o r m a l s e l f - h e l p group. A l l but one p a t i e n t i s seen by at least one health professional on a r e g u l a r b a s i s . The p r o f e s s i o n a l n e a r l y always seen i s the specialist, but a t times i t i s the general practitioner. Only one pers o n r e p o r t e d r e g u l a r c o n t a c t w i t h a nurse. Two o t h e r p e o p l e s a i d they had i r r e g u l a r c o n t a c t w i t h a nurse and a pharmacist, r e s p e c t i v e l y . A l l r e p o r t e d t u r n i n g t o t h e i r p h y s i c i a n s when problems w i t h HPN a r o s e . Seven people had a l s o c o n t a c t e d the nurs e i n some s i t u a t i o n s and one pers o n had c o n t a c t e d a p h a r m a c i s t . - 71 -E l e v e n o f the 19 p a t i e n t s r e p o r t e d t h a t HPN th e r a p y had r e s u l t e d i n some financial cost. F o r the most p a r t , t h e s e c o s t s were l e s s than f i v e hundred d o l l a r s . T h i s money was u s u a l l y spent b u y i n g a second r e f r i g e r a t o r t o s t o r e s o l u t i o n s o r m o d i f y i n g space f o r s t o r a g e o r m i x i n g . Three p e o p l e had h i g h e r expenses due t o r e g u l a r t r i p s t o Vancouver t o v i s i t t h e i r s p e c i a l i s t . One person s t a t e d t h a t income l o s s due t o i l l n e s s was much more s i g n i f i c a n t than expenses i n c u r r e d by HPN per se. In t he f i n a l p a r t o f the q u e s t i o n n a i r e , p a t i e n t s were asked t o r a t e the e f f e c t s HPN had had on t h e i r body image, self-confidence, and overall l i f e . A s c a l e from 1 t o 7, w i t h 1 b e i n g most p o s i t i v e , 4 no e f f e c t , and 7 most n e g a t i v e , was p r o v i d e d . R e s u l t s a re r e c o r d e d on T a b l e 5-11. Four p e o p l e f e l t HPN t h e r a p y had had no e f f e c t on t h e i r body image. E i g h t , however, f e l t t h a t the e f f e c t was n e g a t i v e . These p e o p l e a t t r i b u t e d t he n e g a t i v e e f f e c t t o the c a t h e t e r which they p e r c e i v e d as d i s f i g u r i n g o r making them s e l f - c o n s c i o u s . O t h e r s f e l t t h a t they d i d not look h e a l t h y . On the o t h e r hand, 6 p e o p l e r a t e d HPN's e f f e c t on t h e i r body image as p o s i t i v e . Reasons f o r t h i s p o s i t i v e r a t i n g i n c l u d e d an i n c r e a s e d r e s p e c t f o r l i f e and an improved r e l a t i o n s h i p w i t h the f a m i l y . The mean s c o r e f o r the 18 p e o p l e who responded was 3.9, t h a t i s e s s e n t i a l l y "no e f f e c t " . HPN e f f e c t on self-confidence was v e r y p o s i t i v e w i t h the mean s c o r e b e i n g 3.0. Nine p e o p l e s c o r e d s e l f - c o n f i d e n c e l e s s than 4. Many o f t h i s group s t a t e d t h a t HPN was a " c h a l l e n g e " and t h a t s u c c e e d i n g i n managing the t h e r a p y and r e m a i n i n g h e a l t h y i n c r e a s e d t h e i r s e l f - c o n f i d e n c e . F o r one pe r s o n , b e i n g a b l e t o go back t o work once on HPN ca u s e d the i n c r e a s e i n s e l f - c o n f i d e n c e . - 72 -T a b l e 5-11. E f f e c t s o f HPN (B.C.) E f f e c t P o s i t i v e No E f f e c t N e g a t i v e Mean S c o r e c # o f % P t . # o f % P t . # o f % P t . Body Image 3 6 33 4 22 8 44 3.9 S e l f C o n f i d e n c e 3 9 50 8 44 1 6 3.0 O v e r a l l 5 13 68 2 11 4 21 2.4 a. N = 18 b. N = 19 c. S c o r e on a 7 - p o i n t s c a l e w i t h 1 b e i n g most p o s i t i v e , 4 no e f f e c t , and 7 most n e g a t i v e . T a b l e 5-12. E f f e c t s o f HPN ( S e a t t l e ) 0 E f f e c t P o s i t i v e No E f f e c t N e g a t i v e Mean S c o r e 0 # o f % P t . # o f % P t . • # o f % P t . S e l f Image 3 21 55 9 24 8 21 3.5 O v e r a l l 5 23 64 6 17 7 19 2.7 a. S e l f Image i s d e f i n e d as s e l f - c o n f i d e n c e , body image and s e l f - i m a g e ; N = 38. b. N = 36 c. S c o r e on a 7 - p o i n t s c a l e w i t h 1 b e i n g most p o s i t i v e , 4 no e f f e c t , and 7 most n e g a t i v e . d. F o r d i s c u s s i o n , see page 80. - 73 -E i g h t p e o p l e d i d not a t t r i b u t e any change i n s e l f - c o n f i d e n c e t o HPN. One person ranked the e f f e c t o f HPN on s e l f - c o n f i d e n c e as 7 ( i e . most n e g a t i v e ) . T h i s person d e s c r i b e d the f e a r o f i n f e c t i o n as the source o f the l a c k o f c o n f i d e n c e . The o v e r a l l e f f e c t o f HPN was m a i n l y p o s i t i v e w i t h a mean s c o r e o f 2.4. J u s t 2 p e o p l e f e l t t h a t HPN had no e f f e c t , w h i l e 13, however, saw the e f f e c t t o be p o s i t i v e , and 4 t o be n e g a t i v e . Of t h o s e d e s c r i b i n g the o v e r a l l e f f e c t as p o s i t i v e , 6 c i t e d i n a most emphatic way t h a t HPN had a l l o w e d them t o l i v e . O t h e r s wrote they f e l t so w e l l on HPN and were r e l i e v e d n o t t o be h o s p i t a l i z e d so o f t e n . On the o t h e r hand, 2 o f t h e 4 p e o p l e who r a t e d HPN o v e r a l l n e g a t i v e l y , s a i d they were p h y s i c a l l y unwell on the t h e r a p y . One o f t h e s e two d e s c r i b e s b e i n g t o l d t h a t a normal l i f e s t y l e c o u l d be e x p e c t e d a f t e r HPN t h e r a p y and t h a t t h i s had not been the c a s e . One o t h e r person was r e s e n t f u l o f the r e s t r i c t i o n s HPN had imposed on h i s l i v i n g s i t u a t i o n and a b i l i t y t o t r a v e l . Comparison w i t h the S e a t t l e Study As d e s c r i b e d e a r l i e r , t he q u e s t i o n n a i r e used i n t h i s s t u d y was d e s i g n e d t o a l l o w f o r a comparison w i t h the r e s u l t s o b t a i n e d i n an e a r l i e r study done i n S e a t t l e (Robb, 1983). Where a v a i l a b l e , r e s u l t s o f t h i s S e a t t l e study have been i n c l u d e d i n T a b l e s 5-1 t o 5-11*. However, i n o r d e r t o b e t t e r a p p r e c i a t e t h e s e r e s u l t s , i t i s i m p o r t a n t t o f i r s t o f a l l have an u n d e r s t a n d i n g o f the HPN program i n which t h e s e p a t i e n t s were i n v o l v e d . * (Note p e r c e n t a g e r e s u l t s r e p o r t e d i n T a b l e 5-1 t o 5-11 have been rounded o f f t o the n e a r e s t p e r c e n t . ) - 74 -A. The S e a t t l e Program The HPN program i n S e a t t l e was e s t a b l i s h e d a t the U n i v e r s i t y H o s p i t a l , U n i v e r s i t y o f Washington i n 1970. The t e a c h i n g program was i n i t i a t e d and co-o r d i n a t e d t h r o u g h the U n i v e r s i t y H o s p i t a l pharmacy and, by 1985, had i n v o l v e d more than 200 p a t i e n t s . P a t i e n t s e l e c t i o n i s based on i n p u t from an HPN team c o m p r i s i n g p h y s i c i a n s , a s o c i a l worker, a d i e t i c i a n , and a p h a r m a c i s t . V a s c u l a r a c c e s s i s v i a c e n t r a l venous c a t h e t e r . T e a c h i n g i s done by a c l i n i c a l p h a r m a c i s t and c o v e r s a r e a s common t o the o t h e r HPN programs. I t i s based on a s t e p - b y - s t e p manual which p a t i e n t s can take home f o r r e f e r e n c e . A l l p a t i e n t s a r e t a u g h t t o c o m p l e t e l y mix t h e i r own HPN s o l u t i o n s and t o run s o l u t i o n s v i a an i n t r a v e n o u s i n f u s i o n pump. S u p p l i e s a r e d e l i v e r e d from t he h o s p i t a l o r T r a v a c a r e . Fo l low-up i s w e l l o r g a n i z e d and managed by the Home P a t i e n t Care C o - o r d i n a t o r who p r o v i d e s p a t i e n t s w i t h t e l e p h o n e numbers f o r t w e n t y - f o u r hour per day a c c e s s t o h e a l t h c a r e p r o f e s s i o n a l s , and who c a l l s two days a f t e r d i s c h a r g e and then once per month t o m o n i t o r p r o g r e s s o r r e f e r t o o t h e r p r o f e s s i o n a l s when needed. A l s o , p a t i e n t s r e t u r n t o an o u t p a t i e n t c l i n i c o p e r a t e d by the h o s p i t a l . Here they a r e seen by the HPN p h y s i c i a n s , c l i n i c a l p h a r m a c i s t and t h e d i e t i c i a n . A c l i n i c a l n u r s e draws b l o o d f o r r o u t i n e l a b o r a t o r y t e s t s and a s o c i a l worker i s a v a i l a b l e t o h e l p w i t h p s y c h o s o c i a l problems i f needed. A n e w s l e t t e r c o n t a i n i n g a r t i c l e s on s o c i a l i s s u e s , h i n t s on HPN t e c h n i q u e s , n o t i f i c a t i o n o f su p p l y changes and o t h e r m a t t e r s o f i n t e r e s t i s m a i l e d t o each HPN p a t i e n t once per month (HPN b r o c h u r e U n i v e r s i t y H o s p i t a l , U n i v e r s i t y o f W a s h i n g t o n ) . - 75 -Data f o r the study were c o l l e c t e d i n A p r i l 1982. The q u e s t i o n n a i r e was m a i l e d t o 49 p a t i e n t s and 42 responded. A l l r e s p o n d e n t s had been a c t i v e i n the HPN program a t t h e U n i v e r s i t y H o s p i t a l f o r a t l e a s t 6 months. B. Comparison o f P a t i e n t P o p u l a t i o n s T a b l e s 5-1 and 5-2 show the c o m p a r a t i v e characteristics of the patient populations i n t h e B.C. and S e a t t l e g r o u p s . I t can be seen t h a t the S e a t t l e group i s s i g n i f i c a n t l y o l d e r on average than the B.C. group w i t h the mean age be i n g 50.1 and 34.4 y e a r s r e s p e c t i v e l y , T a b l e 5-1. The S e a t t l e p o p u l a t i o n i s t w o - t h i r d s women w h i l e the B.C. group i s n e a r l y e v e n l y d i v i d e d between males and fe m a l e s , T a b l e 5-2. In B.C., j u s t o v e r o n e - q u a r t e r o f the p o p u l a t i o n i s m a r r i e d , but i n S e a t t l e , more than h a l f a r e . Only 16% o f B.C. p a t i e n t s l i v e a l o n e as compared t o 29% o f p a t i e n t s i n the S e a t t l e group. Over h a l f o f the B.C. p o p u l a t i o n i s employed as wage e a r n e r s , s t u d e n t s o r homemakers, and 21% o f the s e p e o p l e a r e wage e a r n e r s . In the S e a t t l e p o p u l a t i o n , o n l y 22% are l i s t e d as employed o r homemakers and o n l y 12% (5 p a t i e n t s ) have a j o b . However, i t was noted i n the study t h a t j u s t 25% o f the employable p e o p l e ( i e . not r e t i r e d , d i s a b l e d , o r a homemaker) were a c t u a l l y w o r k i n g . The reason f o r the unemploy-ment i n 80% o f t h i s group was the f e a r t h a t w o r k i n g would r e s u l t i n a l o s s o f d i s a b i l i t y c o v e r a g e . There i s a l s o marked d i f f e r e n c e i n pe r c e n t a g e o f people who c o n s i d e r t h e m s e l v e s d i s a b l e d . In B.C., i t i s 42%, w h i l e i n S e a t t l e , o n l y 26% o f peopl e c o n s i d e r t h e m s e l v e s so. However, i f the r e t i r e d group i s added t o the d i s a b l e d , t he r e s u l t i s 43% o f pe o p l e not a b l e t o be employed, s i m i l a r t o t h a t i n B.C. - 76 -The type o f therapy r e c e i v e d by the two groups was s i m i l a r , T a b l e 5-3. A l l t h e S e a t t l e p a t i e n t s had c e n t r a l venous c a t h e t e r s and a l l t o t a l l y mixed t h e i r own s o l u t i o n s . In B.C., 3 p a t i e n t s had PTFE g r a f t s and 10 p a t i e n t s r e c e i v e d s o l u t i o n s t h a t were a t l e a s t p a r t i a l l y pre-mixed. A l l B.C. p a t i e n t s r e c e i v e d f a t e m u l s i o n s as p a r t o f t h e i r weekly p a r e n t e r a l n u t r i t i o n i n f u s i o n s , o n l y 64% o f the S e a t t l e group d i d so. The mean number o f i n f u s i o n s per week was 6.4 i n B.C., compared t o 5.3 i n S e a t t l e , T a b l e 5-1. T r a i n i n g was s i m i l a r i n both s e t t i n g s . The mean l e n g t h o f time on the program was 3.7 and 3.6 y e a r s p e r p a t i e n t . C. Comparison o f R e s u l t s C l i n i c a l data f o r the two p o p u l a t i o n s a r e summarized i n T a b l e 5-4. R e s u l t s appear ve r y s i m i l a r , w i t h mean h o s p i t a l a d m i s s i o n s b e i n g 1.3 and 1.6 per y e a r , and mean l e n g t h o f h o s p i t a l s t a y 11 and 12 days f o r B.C. and S e a t t l e p a t i e n t s , r e s p e c t i v e l y . L i k e w i s e , t he HPN r e l a t e d and c a t h e t e r r e l a t e d h o s p i t a l s t a y s appear s i m i l a r . C a t h e t e r l i f e was l o n g e r on average f o r the S e a t t l e group (22 months v s . 15 months). However, the B.C. f i g u r e a l s o a c c o u n t s f o r 4 c a t h e t e r s t h a t were removed because p a r e n t e r a l n u t r i t i o n was no l o n g e r a r e q u i r e d t h e r a p y . Data showing r e a s o n s f o r c a t h e t e r removal , T a b l e 5-5, a g a i n shows very s i m i l a r r e s u l t s f o r both groups. P h y s i o l o g i c a l compla in t s were, on the whole, l e s s common i n the B.C. group, T a b l e 5-6, w i t h the e x c e p t i o n o f g e n e r a l i z e d weakness, f r e q u e n t u r i n a t i o n w h i l e i n f u s i n g and e p i s o d e s o f d i z z i n e s s when s t a n d i n g , which were r e p o r t e d more - 77 -f r e q u e n t l y . F u r t h e r comparison w i t h o u t more data on the p a t i e n t s ' primary d i s e a s e and o t h e r r e l e v a n t f a c t o r s i s not p o s s i b l e . P h y s i o l o g i c a l c o m p l a i n t s l i s t e d i n T a b l e 5-7 show g r e a t e r v a r i e t y . Only 26% o f the S e a t t l e group who i n f u s e d f a t e m u l s i o n s c o m p l a i n e d o f d i a r r h e a compared t o t h e 50% i n B.C. While r e a s o n s f o r the d i f f e r e n c e a re u n c e r t a i n , i t i s i n t e r e s t i n g because Robb r e p o r t e d t h a t t he o n l y s i g n i f i c a n t p a t i e n t c h a r a c -t e r i s t i c u s e f u l i n d e t e r m i n i n g HPN outcomes was the c o m p l a i n t o f d i a r r h e a . The S e a t t l e p a t i e n t s who c o m p l a i n e d o f d i a r r h e a (7 who i n f u s e d f a t e m u l s i o n s p l u s 9 who d i d not) had s i g n i f i c a n t l y more p h y s i o l o g i c a l c o m p l a i n t s and p s y c h o l o g i c a l i n t e r f e r e n c e s than t he 19 p a t i e n t s who d i d not have c o m p l a i n t s o f d i a r r h e a (Robb, 1983). In B.C., t h i s r e l a t i o n s h i p appears o n l y p a r t i a l l y t r u e . Of t h e 9 p a t i e n t s who c o m p l a i n e d o f d i a r r h e a , 5 (56%) a l s o l i s t e d more than 5 f r e q u e n t p h y s i o l o g i c a l c o m p l a i n t s . Only 3 ( 3 3 % ) o f p a t i e n t s w i t h o u t d i a r r h e a l i s t e d more than 5 p h y s i o l o g i c a l c o m p l a i n t s ( T a b l e 5-13). The p o s s i b l e c o m p l a i n t s c o n s i d e r e d were the 16 l i s t e d i n T a b l e 5-6 and 5-7. T a b l e 5-13. F r e q u e n t D i a r r h e a v s . F r e q u e n t P h y s i o l o g i c a l Symptoms ( P a t i e n t s ) Number o f F r e q u e n t P h y s i o l o g i c a l Symptoms >5 <5 F r e q u e n t Yes 5 4 D i a r r h e a No 3 6 8 10 - 78 -Thus, i t does seem t h a t i f a p a t i e n t c o m p l a i n s o f d i a r r h e a , i t i s l i k e l y t h a t a g r e a t e r number o f p h y s i o l o g i c a l symptoms w i l l a l s o be a problem. F u r t h e r i n v e s t i g a t i o n c o u l d e s t a b l i s h whether the d i a r r h e a was one i n d i c a t i o n o f more s e v e r e p r i m a r y d i s e a s e , o r an i n d i c a t i o n o f problems w i t h the p a r e n t e r a l n u t r i t i o n t h e r a p y i t s e l f , o r u n r e l a t e d t o e i t h e r . I t s h o u l d a l s o be noted t h a t due t o the small numbers i n the B.C. stu d y , s t a t i s t i c a l t e s t s f o r s i g n i f i c a n c e were not performed. However, the data a re t a b u l a t e d i n two-by-two t a b l e s and p e r c e n t a g e s o f p a t i e n t s a r e i n d i c a t e d where a p p r o p r i a t e . The second p a r t o f the r e l a t i o n s h i p r e p o r t e d by Robb ( i e . t h a t p a t i e n t s c o m p l a i n i n g o f d i a r r h e a had h i g h e r p s y c h o s o c i a l i n t e r f e r e n c e s c o r e s than t h o s e who d i d not have d i a r r h e a ) , does n o t appear t o h o l d t r u e i n B.C. In the S e a t t l e s t u d y , i n t e r f e r e n c e s c o r e ranged from a p o s s i b l e 0 t o 12. Each o f 12 d a i l y a c t i v i t i e s o r i n t e r p e r s o n a l r e l a t i o n s h i p s i n t e r f e r e d w i t h was g i v e n a p o i n t v a l u e o f 1. The a g g r e g a t e s c o r e was l a b e l l e d the " p s y c h o s o c i a l i n t e r f e r e n c e index s c o r e " . The d a i l y a c t i v i t i e s and i n t e r p e r s o n a l r e l a t i o n s h i p s c o n s i d e r e d were: s l e e p , t r a v e l , sex l i f e , e x e r c i s e , l e i s u r e t i m e , m a r i t a l r e l a t i o n s h i p , f a m i l y l i f e , s o c i a l l i f e , community f u n c t i o n s , r e l i g i o u s a c t i v i t i e s , a p p e t i t e and f r i e n d s ' d i f f i c u l t y i n a c c e p t i n g HPN. The range o f s c o r e s was 0 t o 12 w i t h the mean b e i n g 4.2. In B.C., a s l i g h t l y d i f f e r e n t index s c o r e was used. The p o s s i b l e range was 0 t o 18. The v a r i a b l e s c o n s i d e r e d were s l e e p , t r a v e l , sex l i f e , e x e r c i s e , l e i s u r e t i m e , m a r i t a l r e l a t i o n s h i p , f a m i l y l i f e , r e l i g i o n and work ( T a b l e 5-8). One p o i n t was g i v e n i f HPN caused a moderate i n t e r f e r e n c e w i t h any o f t h e s e a c t i v i t i e s and 2 p o i n t s were a s s i g n e d i f the i n t e r f e r e n c e was s e v e r e . The a g g r e g a t e s c o r e was the " p s y c h o s o c i a l i n t e r f e r e n c e index s c o r e " . - 79 -The range o f index s c o r e s was 1 t o 14, w i t h a mean o f 5.8. Because o f t h e d i f f e r e n c e i n index s c o r e s used between the two s t u d i e s , no attempt was made t o d i r e c t l y compare them. N e v e r t h e l e s s , i t i s i n t e r e s t i n g t h a t on average, B.C. resp o n d e n t s c o m p l a i n e d o f i n t e r f e r e n c e w i t h 50% o f the 9 a c t i v i t i e s c o n s i d e r e d , w h i l e S e a t t l e r e s p o n d e n t s complained o f i n t e r f e r e n c e w i t h o n l y 27% o f 12 a c t i v i t i e s . The p r e s e n c e o f f r e q u e n t d i a r r h e a was compared t o the p s y c h o s o c i a l i n t e r -f e r e n c e index s c o r e and the r e s u l t s a re shown i n T a b l e 5-14. T a b l e 5-14. F r e q u e n t D i a r r h e a v s . P s y c h o s o c i a l I n t e r f e r e n c e Index Sco r e  ( P a t i e n t s ) " P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e >5 <5 Fr e q u e n t Yes 3 6 D i a r r h e a No 4 5 7 11 T h i s f i g u r e shows t h a t o f t h e 9 p a t i e n t s who had f r e q u e n t d i a r r h e a , o n l y 3 (33%) had index s c o r e s g r e a t e r than 5, w h i l e o f the 9 p a t i e n t s who d i d not so compl a i n o f d i a r r h e a , 4 (44%) had h i g h index s c o r e s . One c o u l d , t h e r e f o r e , c o n c l u d e t h a t the p r e s e n c e o f d i a r r h e a does not seem t o be p r e d i c t i v e o f a high p s y c h o s o c i a l i n t e r f e r e n c e index s c o r e , u n l i k e the r e l a t i o n s h i p s u g g e s t e d by Robb (Robb, 1983). - 80 -Of the o t h e r c o m p l a i n t s l i s t e d i n T a b l e 5-7, nausea was a problem f o r 37% and abdominal cramps f o r a p p r o x i m a t e l y 20% o f both groups. S h o r t n e s s o f b r e a t h , pounding c h e s t and unusual t a s t e were r e p o r t e d as problems more f r e q u e n t l y by the S e a t t l e group. T a b l e 5-8 compares the two groups i n r e g a r d t o p a t i e n t c o m p l a i n t s o f interference with the acti v i t i e s l i s t e d . U n l i k e the p r e s e n t s t u d y , the S e a t t l e q u e s t i o n n a i r e d i d not ask f o r degree o f i n t e r f e r e n c e w i t h each a c t i v i t y and t h u s , r e s u l t s a r e l i s t e d as o n l y p e r c e n t a g e o f p a t i e n t s w i t h c o m p l a i n t s . Thus, p a t i e n t s i n t h i s study w i t h moderate and se v e r e c o m p l a i n t s were added i n o r d e r t o a l l o w comparison w i t h the S e a t t l e group. C l e a r l y , the r e s u l t s o f the B.C. study are v e r y d i f f e r e n t from what Robb r e p o r t e d (Robb, 1983). I n t e r f e r e n c e w i t h a l l a c t i v i t i e s , w i t h the e x c e p t i o n o f m a r i t a l r e l a t i o n s and r e l i g i o u s a c t i v i t i e s was r e p o r t e d w i t h much h i g h e r f r e q u e n c i e s i n B.C. than i n S e a t t l e . The re a s o n f o r t h i s d i f f e r e n c e i s not easy t o a s c e r t a i n . However, a p o s s i b l e e x p l a n a t i o n may be t h a t S e a t t l e p a t i e n t s were p r o v i d e d w i t h more f o l l o w - u p s e r v i c e s a f t e r h o s p i t a l d i s c h a r g e and ar e a p p a r e n t l y g i v e n more p s y c h o s o c i a l s u p p o r t . Another p o s s i b i l i t y i s t h a t the S e a t t l e q u e s t i o n n a i r e o n l y a l l o w e d p a t i e n t s t o i n d i c a t e i f a c t i v i t i e s were i n t e r f e r e d w i t h o r n o t . Thus, some p a t i e n t s w i t h moderate i n t e r f e r e n c e o f any a c t i v i t y may not have i n d i c a t e d i t as a problem. T a b l e 5-11 and 5-12 p r o v i d e t h e f i n a l comparison of th e two groups. A l l p a t i e n t s were asked t o r a t e HPN e f f e c t s on a 7 - p o i n t s c a l e . In B.C., p e o p l e were asked t o r e p o r t e f f e c t s on body image, self-confidence as w e l l as overall effect. In S e a t t l e , p a t i e n t s r a t e d HPN e f f e c t s on s e l f - i m a g e , which was d e f i n e d as "the way you t h i n k about y o u r s e l f , i n o t h e r words, y o u r s e l f -- 81 -c o n f i d e n c e , body image and s e l f - i m a g e " , and o v e r a l l l i f e (Robb, 1983). Mean r e s u l t s f o r both groups show the HPN e f f e c t t o be p o s i t i v e , e s p e c i a l l y w i t h r e g a r d t o the o v e r a l l r e s p o n s e . O v e r a l l e f f e c t s were good i n both groups. On the 7 - p o i n t s c a l e , w i t h 1 b e i n g most p o s i t i v e , 4 no e f f e c t , and 7 most n e g a t i v e , both groups r a t e d the o v e r a l l e f f e c t as v e r y p o s i t i v e w i t h the mean r e s u l t s f o r B.C. and S e a t t l e r e s p e c t i v e l y b e i n g 2.4 and 2.7. R a t i n g s f o r s e l f - i m a g e ( S e a t t l e ) , body image ( B . C . ) , and s e l f - c o n f i d e n c e ( B . C . ) , were l e s s p o s i t i v e w i t h means o f 3.5, 3.9 and 3.0. Thus, t o c o n c l u d e t h e comparison, i t would appear t h a t HPN i n B.C. caused p a t i e n t s l e s s p h y s i o l o g i c a l symptoms, but more p s y c h o s o c i a l i n t e r f e r e n c e w i t h a c t i v i t i e s than d i d HPN i n S e a t t l e . The S e a t t l e f i n d i n g t h a t c h r o n i c d i a r r h e a was a p r e d i c t o r o f m e d i c a l and p s y c h o s o c i a l problems was not e n t i r e l y s u p p o r t e d by d a t a o b t a i n e d i n t h i s s t u d y . F u r t h e r F i n d i n g s from the P a t i e n t Q u e s t i o n n a i r e The data from the p a t i e n t q u e s t i o n n a i r e were f u r t h e r examined t o see i f any p a t i e n t c h a r a c t e r i s t i c , o t h e r than d i a r r h e a , was a s s o c i a t e d w i t h e i t h e r a l a r g e number o f p h y s i o l o g i c a l problems o r w i t h a h i g h degree o f p s y c h o s o c i a l problems. The outcome parameters c o n s i d e r e d were the number o f p h y s i o l o g i c a l symptoms, the p s y c h o s o c i a l i n t e r f e r e n c e index s c o r e , the e f f e c t o f HPN on body image, the e f f e c t o f HPN on s e l f - c o n f i d e n c e , and the o v e r a l l r a t i n g o f HPN. - 82 -A. HPN's E f f e c t on P h y s i o l o g i c a l Symptoms P a t i e n t r e s p o n s e s were c l a s s e d i n 2 groups, t h o s e w i t h 5 or l e s s f r e q u e n t p h y s i o l o g i c a l c o m p l a i n t s ( N = l l ) , and t h o s e w i t h more than 5 c o m p l a i n t s . C o m p l a i n t s c o n s i d e r e d a r e t h o s e l i s t e d i n T a b l e s 5-6 and 5-7, w i t h the e x c e p t i o n o f d i a r r h e a . E l e v e n p a t i e n t s were i n the f i r s t group and 8 i n the l a t t e r . P a t i e n t gender d i d not appear t o have any r e l a t i o n s h i p t o the number o f p h y s i o -l o g i c a l c o m p l a i n t s nor d i d whether a person l i v e d a l o n e or was employed. A number o f o t h e r c h a r a c t e r i s t i c s d i d , however, seem t o be r e l a t e d t o p h y s i o l o g i -c a l problems. Age: When the d a t a were examined i n r e l a t i o n t o age, i t appeared t h a t o n l y 20% o f t h o s e under 30 y e a r s o f age c o m p l a i n e d o f more than 5 p h y s i o l o g i c a l problems compared w i t h 60% o f t h o s e 31 t o 50 y e a r s o f age and 75% o f t h o s e o v e r 50 ( T a b l e 5-15). T h i s t r e n d i s , o f c o u r s e , a l s o seen i n the g e n e r a l p o p u l a t i o n not on HPN.. T a b l e 5-15. F r e q u e n t P h y s i o l o g i c a l Symptoms v s . Age Number o f F r e q u e n t P h y s i o l o g i c a l Symptoms Age >5 <5 16-30 y r s . 2 8 10 31-50 y r s . 3 2 5 51-60 y r s . 3 1 4 8 11 Ideal Weight: A t t a i n i n g i d e a l weight d i d not appear t o have any b e n e f i t as f a r as p r o d u c i n g fewer p h y s i o l o g i c a l problems. Of the 10 p a t i e n t s w i t h i n the i d e a l - 83 -range, 60% (6 p a t i e n t s ) complained o f a hi g h number o f p h y s i o l o g i c a l problems w h i l e o n l y 22% (2 p a t i e n t s ) o f the 9 who were not w i t h i n the i d e a l range so i n d i c a t e d ( T a b l e 5-16). T a b l e 5-16. F r e q u e n t P h y s i o l o g i c a l Symptoms v s . Ideal Weight Number o f F r e q u e n t P h y s i o l o g i c a l Symptoms >5 <5 Yes 6 4 10 No 2 7 9 8 11 D i a g n o s i s : D i a g n o s i s d i d seem t o be an i m p o r t a n t f a c t o r ( T a b l e 5-17). Only 9% (1 p a t i e n t ) o f the 11 Crohn's p a t i e n t s r e p o r t e d f r e q u e n t p h y s i o l o g i c a l problems (>5), b ut 86% (6 p a t i e n t s ) o f the 7 p a t i e n t s w i t h o t h e r d i a g n o s e s c i t e d such problems. F u r t h e r comment on t h e s e f i n d i n g s i s d i f f i c u l t g i v e n t he small sample s i z e . - 84 -T a b l e 5-17. F r e q u e n t P h y s i o l o g i c a l Symptoms v s . D i a g n o s i s ( P a t i e n t s ) Number o f F r e q u e n t P h y s i o l o g i c a l Symptoms >5 <5 Yes 1 10 11 No 6 1 7 7 11 Time on HPN: P a t i e n t s who had been on HPN l o n g e r than one y e a r appeared to have l e s s p h y s i o l o g i c a l problems than t h o s e who had been on l e s s than one y e a r ( T a b l e 5-18). 22% (2 p a t i e n t s ) o f 9, who had been on l o n g e r than one y e a r r e p o r t e d a hi g h number o f p h y s i o l o g i c a l problems compared w i t h 60% (6 p a t i e n t s ) of the 10, who had been on HPN l e s s than one y e a r . F u r t h e r i n f o r m a t i o n would be r e q u i r e d t o d e t e r m i n e whether t h i s was due t o m o d i f i c a t i o n o f the n u t r i t i o n s o l u t i o n s t o e l i m i n a t e problems t h a t had i n i t i a l l y been p r e c i p i t a t e d , o r whether the group o f HPN p a t i e n t s r e m a i n i n g on HPN t h e r a p y a f t e r one y e a r r e p r e s e n t e d a p o p u l a t i o n t h a t was h e a l t h i e r , w i t h s i c k e r p a t i e n t s h a v i n g r e t u r n e d t o h o s p i t a l o r d i e d . - 85 -T a b l e 5-18. F r e q u e n t P h y s i o l o g i c a l Symptoms vs. Time on HPN ( P a t i e n t s ) Number o f F r e q u e n t P h y s i o l o g i c a l Symptoms >5 <5 Time on HPN >1 yr. 2 7 <1 y r . 6 4 8 11 Time R e q u i r e d f o r HPN: P a t i e n t s were d i v i d e d i n t o 2 groups depending on the number o f hours per week r e q u i r e d t o p r e p a r e and run p a r e n t e r a l n u t r i t i o n s o l u t i o n s . F o r 8 p a t i e n t s , t h i s time was g r e a t e r than 80 hou r s . Of the s e 8, 62% (5 p a t i e n t s ) had a h i g h number o f p h y s i o l o g i c a l symptoms. Of the 11 pe r s o n s whose time commitment was l e s s than 80 hours per week, o n l y 27% (3 p a t i e n t s ) r e p o r t e d more than 5 p h y s i o l o g i c a l symptoms ( T a b l e 5-19). T a b l e 5-19. F r e q u e n t P h y s i o l o g i c a l Symptoms v s . Time R e q u i r e d f o r HPN  ( P a t i e n t s T Number o f F r e q u e n t P h y s i o l o g i c a l Symptoms >5 <5 Hours f o r >80 h r . 5 3 HPN p e r week <80 h r . 3 8 8 11 - 86 -T h i s r e s u l t i s not s u r p r i s i n g . P a t i e n t s whose HPN r e q u i r e d more than 80 hours per week a l l ran p a r e n t e r a l n u t r i t i o n s o l u t i o n s 7 days per week, perhaps i n d i c a t i n g a more s e v e r e form o f d i s e a s e . P a t i e n t s who ran p a r e n t e r a l n u t r i t i o n s o l u t i o n s l e s s o f t e n , presumably had a g r e a t e r c a p a b i l i t y o f a b s o r b i n g n u t r i e n t s o r a l l y . G i ven t h i s assumption, i t f o l l o w s t h a t the former group i s more l i k e l y t o have a g r e a t e r number o f p h y s i o l o g i c a l problems, both due t o t h e i r p rimary d i s e a s e and t o the p a r e n t e r a l n u t r i t i o n t h e r a p y i t s e l f . More s p e c i f i c c o n c l u -s i o n s c a n n o t be drawn w i t h o u t a d d i t i o n a l i n f o r m a t i o n . Area o f R e s i d e n c e : I t i s a l s o i n t e r e s t i n g t o note t h a t t h o s e p a t i e n t s r e s i d i n g i n t h e lower m a i n l a n d a r e a o f the p r o v i n c e seemed t o e x p e r i e n c e fewer problems. Only 20% (2 p a t i e n t s ) o f 10 p a t i e n t s l i v i n g i n the lower m a i n l a n d r e p o r t e d a h i g h number o f p h y s i o l o g i c a l problems compared w i t h 67% (6 p a t i e n t s ) o f 9 p a t i e n t s l i v i n g i n o t h e r a r e a s o f the p r o v i n c e ( T a b l e 5-20). T a b l e 5-20. F r e q u e n t P h y s i o l o g i c a l Symptoms v s . Area o f R e s i d e n c e ( P a t i e n t s ) Number o f F r e q u e n t P h y s i o l o g i c a l Symptoms >5 <5 Lower Yes 2 8 M a i n l a n d No 6 3 8 11 - 87 -One i s tempted t o c o n c l u d e t h a t t h i s r e s u l t i s due t o HPN p a t i e n t s l i v i n g i n t he lower m a i n l a n d , h a v i n g e a s i e r a c c e s s t o h e a l t h p r o f e s s i o n a l s , p a r t i c u l a r -l y the s p e c i a l i s t p h y s i c i a n s as t h e s e a r e a l l l o c a t e d i n the lower mainland a r e a . However, f u r t h e r i n v e s t i g a t i o n would be r e q u i r e d t o c o n f i r m t h i s . P y s c h o s o c i a l Problems: S u r p r i s i n g l y , t h e r e was no a p p a r e n t r e l a t i o n s h i p between a h i g h number o f p h y s i o l o g i c a l problems and a h i g h number o f p s y c h o s o c i a l problems o r p e o p l e s ' p e r c e p t i o n o f HPN's e f f e c t on body image, s e l f - c o n f i d e n c e o r o v e r a l l l i f e . P e o p l e w i t h a h i g h number o f p h y s i o l o g i c a l symptoms d i d not have a h i g h e r p s y c h o s o c i a l i n t e r f e r e n c e index s c o r e , nor d i d they r a t e HPN's e f f e c t on body image, s e l f - c o n f i d e n c e o r o v e r a l l l i f e more n e g a t i v e l y . B. HPN's E f f e c t on P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e As d e s c r i b e d e a r l i e r , a p s y c h o s o c i a l i n t e r f e r e n c e index s c o r e was a s s i g n e d t o each p a t i e n t . P a t i e n t s were then p l a c e d i n 2 groups, t h o s e h a v i n g an i n t e r -f e r e n c e s c o r e o f g r e a t e r than 5, and t h o s e w i t h a s c o r e l e s s than o r equal t o 5. T h i s p s y c h o s o c i a l i n t e r f e r e n c e s c o r e was then c o n s i d e r e d i n r e l a t i o n t o a number o f p a t i e n t c h a r a c t e r i s t i c s . P a t i e n t sex, m a r i t a l s t a t u s , a t t a i n m e n t o f i d e a l w e i g h t , l o c a t i o n o f r e s i d e n c e , and l i v i n g s t a t u s d i d not seem t o be r e l a t e d t o t h e i n t e r f e r e n c e s c o r e . However, as w i t h the number o f f r e q u e n t p h y s i o l o g i c a l c o m p l a i n t s ; age, l e n g t h o f time on HPN, and the number o f hours devoted t o HPN, d i d appear t o show some r e l a t i o n s h i p . Age: I n c r e a s i n g age appeared t o be a s s o c i a t e d w i t h a h i g h e r p s y c h o s o c i a l i n t e r f e r e n c e s c o r e as i n d i c a t e d by T a b l e 5-21. - 88 -T a b l e 5-21. P s y c h o s o c i a l I n t e r f e r e n c e Index Sco r e vs. Age ( P a t i e n t s ) P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e More L e s s I n t e r f e r e n c e I n t e r f e r e n c e >5 <5 16-30 3 7 10 31-50 2 3 5 51-60 2 2 4 7 12 30% o f 10 p a t i e n t s l e s s than 31 y e a r s o f age had i n t e r f e r e n c e s c o r e s g r e a t e r than 5 compared t o 40% o f 5 p a t i e n t s between 31 and 50 y e a r s o f age, and 50% o f 4 p a t i e n t s o v e r 50 y e a r s o f age. T h i s e f f e c t i s , however, l e s s pronoun-ced than t h a t f o r p h y s i o l o g i c a l symptoms ( T a b l e 5-15). Time on HPN: P a t i e n t s who had been on HPN f o r more than one y e a r a l s o r e p o r t e d l e s s p s y c h o s o c i a l i n t e r f e r e n c e w i t h o n l y 22% o f 9 p a t i e n t s h a v i n g a s c o r e o f g r e a t e r than 5 compared w i t h 50% o f 10 p a t i e n t s who had been on the program l e s s than one y e a r ( T a b l e 5-22). These r e s u l t s a r e very s i m i l a r t o thos e comparing time on HPN w i t h p h y s i o l o g i c a l symptoms ( T a b l e 5-18). - 89 -T a b l e 5-22. P s y c h o s o c i a l I n t e r f e r e n c e Index Score v s . Time on HPN ( P a t i e n t s ) P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e Time on HPN More Less I n t e r f e r e n c e I n t e r f e r e n c e >5 <5 >1 y r . 2 7 9 <1 y r . 5 5 10 7 12 T h i s can perhaps be a t t r i b u t e d t o the adju s t m e n t p a t i e n t s make t o HPN as d e c r i b e d i n C h a p t e r 2. However, b e f o r e t h i s c o n c l u s i o n can be a r r i v e d a t , f u r t h e r i n f o r m a t i o n i s n e c e s s a r y t o en s u r e t h a t the p a t i e n t s r e m a i n i n g a f t e r one y e a r do not r e p r e s e n t a d i f f e r e n t p o p u l a t i o n o f HPN p a t i e n t s ; f o r example, t h a t p a t i e n t s who found HPN ca u s e d a g r e a t deal o f i n t e r f e r e n c e d i d not drop o u t o f the program and r e t u r n t o h o s p i t a l , o r change t h e i r d i s e a s e management t o an o t h e r form o f t h e r a p y . Time R e q u i r e d f o r HPN: P r e d i c t a b l y , p a t i e n t s who spent more hours p r e p a r i n g and r u n n i n g p a r e n t e r a l n u t r i t i o n s o l u t i o n s r e p o r t e d more p s y c h o s o c i a l i n t e r f e r e n c e , ( T a b l e 5-23). 50% o f t h o s e p a t i e n t s who spe n t more than 80 hours per week i n th e s e f u n c t i o n s had an i n t e r f e r e n c e s c o r e g r e a t e r than 5, compared w i t h 27% who sp e n t l e s s . A g a i n , t h e s e r e s u l t s a r e s i m l a r t o thos e comparing time r e q u i r e d f o r HPN w i t h p h y s i o l o g i c a l symptoms ( T a b l e 5-19). - 90 -T a b l e 5-23. P s y c h o s o c i a l I n t e r f e r e n c e Index Sco r e v s . Time R e q u i r e d f o r HPN  ( P a t i e n t s ) " ' P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e More Less I n t e r f e r e n c e I n t e r f e r e n c e >5 <5 Hours f o r HPN >80 h r . 4 4 p e r week <80 h r . 3 8 7 12 O c c u p a t i o n : P e o p l e who were employed had lower i n t e r f e r e n c e s c o r e s than those who were not ( T a b l e 5-24), u n l i k e the r e s u l t s i n d i c a t i n g o c c u p a t i o n d i d not appear r e l a t e d t o the number o f p h y s i o l o g i c a l symptoms co m p l a i n e d o f . Of the 10 p e o p l e employed as wage e a r n e r s , homemakers, o r s t u d e n t s , o n l y 20% had s c o r e s h i g h e r than 5, compared w i t h 56% (5 p a t i e n t s ) o f the 9 unemployed. I t i s a l s o o f i n t e r e s t t h a t o f the 10 employed, o n l y 30% s p e n t more than 80 hours w i t h HPN f u n c t i o n s . F i v e (56%) o f t h e 9 unemployed p e o p l e a l s o r e q u i r e d more than 80 hours per week t o p r e p a r e and a d m i n i s t e r HPN s o l u t i o n s . T h i s d a t a would thus appear t o i n d i c a t e t h a t t h o s e p a t i e n t s s p e n d i n g l e s s than 80 hours per week (11.4 hours per day on average) p r e p a r i n g and a d m i n i s t e r i n g HPN, are more l i k e l y t o work and l e s s l i k e l y t o have a h i g h p s y c h o s o c i a l i n t e r f e r e n c e index s c o r e . - 91 -T a b l e 5-24. P s y c h o s o c i a l I n t e r f e r e n c e Index Score v s . O c c u p a t i o n ( P a t i e n t s ) P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e Employed Yes No More Less I n t e r f e r e n c e I n t e r f e r e n c e >5 <5 2 8 5 4 7 12 10 9 Body Image, S e l f - C o n f i d e n c e , O v e r a l l : I t was a l s o found t h a t p a t i e n t s with a h i g h i n t e r f e r e n c e s c o r e r a t e d HPN's e f f e c t on body image, s e l f - c o n f i d e n c e , and o v e r a l l l i f e more n e g a t i v e l y on the 7 - p o i n t s c a l e . T h i s t r e n d was not seen w i t h a h i g h number o f p h y s i o l o g i c a l c o m p l a i n t s . T a b l e 5-25 shows p a t i e n t r a t i n g o f body image v s . index s c o r e . T a b l e 5-25. P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e v s . HPN's E f f e c t on Body  Image ( P a t i e n t s ) " P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e HPN's E f f e c t on Body Image More Less I n t e r f e r e n c e I n t e r f e r e n c e >5 <5 >4 (No E f f e c t 6 6 o r N e g a t i v e ) <4 0 6 ( P o s i t i v e ) 6 12 12 - 92 -50% o f t h e 12 p a t i e n t s w i t h a r a t i n g g r e a t e r than or equal t o 4 on the 7 - p o i n t s c a l e r a t i n g body image, had a p s y c h o s o c i a l i n t e r f e r e n c e i n d e x s c o r e l e s s than 5, compared w i t h 100% o f 6 p a t i e n t s who r a t e d body image l e s s than 4. T a b l e 5-26 shows p a t i e n t r a t i n g o f s e l f - c o n f i d e n c e i n r e l a t i o n t o index s c o r e . T a b l e 5-26. P s y c h o s o c i a l I n t e r f e r e n c e Index Sco r e vs HPN's E f f e c t on S e l f - C o n f i d e n c e ( P a t i e n t s ) P s y c h o s o c i a l , I n t e r f e r e n c e Index S c o r e More Less I n t e r f e r e n c e I n t e r f e r e n c e >5 <5 HPN's >4 (No E f f e c t o r N e g a t i v e ) 4 5 E f f e c t on S e l f C o n f i d e n c e <4 ( P o s i t i v e ) 2 7 6 12 44% (4 p a t i e n t s ) o f 9 who r a t e d s e l f - c o n f i d e n c e 4 o r g r e a t e r , had a high index s c o r e compared w i t h 22% (2 p a t i e n t s ) o f 9 w i t h lower r a t i n g s ( i e . more p o s i t i v e ) o f s e l f - c o n f i d e n c e . T a b l e 5-27 shows p a t i e n t o v e r a l l r a t i n g o f HPN i n r e l a t i o n t o index s c o r e . - 93 -T a b l e 5-27. P s y c h o s o c i a l I n t e r f e r e n c e Index Score vs HPN's E f f e c t O v e r a l l ( P a t i e n t s ) P s y c h o s o c i a l I n t e r f e r e n c e Index S c o r e More Less I n t e r f e r e n c e I n t e r f e r e n c e >5 <5 HPN's >4 (No E f f e c t o r N e g a t i v e ) 5 1 E f f e c t O v e r al1 <4 ( P o s i t i v e ) 2 11 7 12 83% (5 p a t i e n t s ) o f the 6 who r a t e d HPN's o v e r a l l e f f e c t 4 o r g r e a t e r , had a hig h index s c o r e , compared w i t h 15% (2 p a t i e n t s ) o f the 13 who r a t e d the o v e r a l l e f f e c t l e s s than 4. C. HPN's E f f e c t on Body Image I t i s i n t e r e s t i n g t h a t a n e g a t i v e r a t i n g o f HPN's e f f e c t on body image was a p p a r e n t l y not a s s o c i a t e d w i t h age, sex, a t t a i n m e n t o f i d e a l w e i g h t , m a r i t a l s t a t u s , l i v i n g s t a t u s , time on HPN, t o t a l weekly time r e q u i r e d f o r HPN, employ-ment s t a t u s o r d i a g n o s i s . However, i t d i d seem t o be r e l a t e d t o p l a c e o f r e s i d e n c e . 90% o f p a t i e n t s l i v i n g i n the lower m a i n l a n d a r e a r a t e d HPN's e f f e c t on body image n e g a t i v e l y compared w i t h o n l y 38% o f p a t i e n t s l i v i n g i n o t h e r a r e a s o f the p r o v i n c e . The re a s o n f o r t h i s i s unknown. - 94 -D. HPN's E f f e c t on S e l f - C o n f i d e n c e S i m i l a r t o the r e s u l t s above, p a t i e n t s ' r a t i n g o f HPN's e f f e c t on s e l f -c o n f i d e n c e was u n r e l a t e d t o many p a t i e n t c h a r a c t e r i s t i c s , f o r example, age, sex, a t t a i n m e n t o f i d e a l w e i g h t , m a r i t a l s t a t u s , l i v i n g s t a t u s , and d i a g n o s i s . Time on HPN: Length o f time on HPN d i d , however, seem t o a f f e c t p e o p l e ' s r a t i n g o f s e l f - c o n f i d e n c e , i n t h a t more p a t i e n t s who had been on HPN l o n g e r than one y e a r , r a t e d HPN's e f f e c t on s e l f - c o n f i d e n c e p o s i t i v e l y (67%), than those newer t o i t ( 3 3 % ) , T a b l e 5-28. T a b l e 5-28. HPN's E f f e c t on S e l f - C o n f i d e n c e vs Time on HPN ( P a t i e n t s ) HPN's E f f e c t on S e l f - C o n f i d e n c e Time on HPN > 1 y r . < 1 y r . >4 <4 (No E f f e c t ( P o s i t i v e ) o r N e g a t i v e ) 3 6 6 3 9 9 9 9 T h i s f i n d i n g i s p r e d i c t a b l e g i v e n t he o p i n i o n e x p r e s s e d by so many p a t i e n t s t h a t s u c c e s s f u l management o f HPN t h e r a p y gave them a sense o f accomplishment (see p.71). A g a i n , however, i t i s n e c e s s a r y t o ensure t h a t the p a t i e n t p o p u l a -t i o n r e m a i n i n g a f t e r one y e a r does not b i a s t h i s c o n c l u s i o n . O c c u p a t i o n : L i k e w i s e , t h o s e p a t i e n t s who were employed r a t e d HPN's e f f e c t on s e l f - c o n f i d e n c e more p o s i t i v e l y . 70% o f 10 p a t i e n t s employed r a t e d the e f f e c t s - 95 -of HPN on s e l f - c o n f i d e n c e p o s i t i v e l y ( l e s s than 4 ) , w h i l e o n l y 25% o f thos e unemployed gave a p o s i t i v e r a t i n g , T a b l e 5-29. T a b l e 5-29. HPN's E f f e c t on S e l f - C o n f i d e n c e vs O c c u p a t i o n ( P a t i e n t s ) HPN's E f f e c t on S e l f - C o n f i d e n c e Employed >4 (No E f f e c t o r N e g a t i v e ) <4 ( P o s i t i v e ) Yes 3 7 10 No 6 2 8 9 9 Ag a i n , i t seems r e a s o n a b l e t h a t p e o p l e a b l e t o be employed would r a t e HPN's e f f e c t on s e l f - c o n f i d e n c e more p o s i t i v e l y ( s e e p.71). Time R e q u i r e d f o r HPN: I t was a l s o found t h a t p a t i e n t s who spen t l e s s than 80 hours weekly p r e p a r i n g and r u n n i n g p a r e n t e r a l n u t r i t i o n r a t e d HPN's e f f e c t on s e l f - c o n f i d e n c e more p o s i t i v l e y than p a t i e n t s who spen t l o n g e r . E. O v e r a l l R a t i n g o f HPN L a s t l y , p a t i e n t c h a r a c t e r i s t i c s were examined f o r r e l a t i o n s h i p t o the o v e r a l l r a t i n g o f HPN, w i t h s i m i l a r r e s u l t s t o thos e found f o r HPN's e f f e c t on body image and s e l f - c o n f i d e n c e . Age, sex, a t t a i n m e n t o f i d e a l w e i g h t , m a r i t a l s t a t u s , l i v i n g s t a t u s , d i a g n o s i s , time on HPN and t o t a l weekly time r e q u i r e d f o r HPN o r p l a c e o f r e s i d e n c e d i d not appear a s s o c i a t e d . B e i n g employed, however, - 96 -seemed to make a d i f f e r e n c e , w i t h more o f t h o s e h a v i n g a j o b (80%) r a t i n g HPN's e f f e c t o v e r a l l more p o s i t i v e l y than t h o s e who were unemployed ( 5 6 % ) , T a b l e 5-30. T a b l e 5-30. HPN's E f f e c t O v e r a l l vs O c c u p a t i o n ( P a t i e n t s ) HPN's E f f e c t O v e r a l l Employed Yes No >4 <4 (No E f f e c t ( P o s i t i v e ) o r N e g a t i v e ) 2 8 4 5 6 13 10 9 As e x p e c t e d , persons who r a t e d HPN's e f f e c t on body image (83%) and s e l f -c o n f i d e n c e (89%) more p o s i t i v e l y a l s o r a t e d o v e r a l l e f f e c t s more p o s i t i v e l y . F. C o n c l u d i n g Comment The r e s u l t s o f t h i s p a t i e n t s u r v e y appear t o i n d i c a t e t h a t p a t i e n t age, l e n g t h o f time on HPN, number o f hours per week devoted t o HPN, o c c u p a t i o n and p l a c e o f r e s i d e n c e a r e the most i m p o r t a n t v a r i a b l e s i n p r e d i c t i n g p a t i e n t outcome. P a t i e n t s t h a t a r e o l d e r , have been on HPN l e s s than one y e a r , or spend more than 80 hours per week p r e p a r i n g and a d m i n i s t e r i n g HPN have more p h y s i o -l o g i c a l c o m p l a i n t s and a h i g h e r p s y c h o s o c i a l i n t e r f e r e n c e index s c o r e . A l s o , - 97 -p a t i e n t s who have been on HPN l o n g e r than one y e a r o r who spend l e s s than 80 hours per week w i t h HPN r a t e HPN's e f f e c t on s e l f - c o n f i d e n c e more p o s i t i v e l y . Persons who a r e employed appear t o have l e s s p s y c h o s o c i a l i n t e r f e r e n c e , and r a t e d HPN's e f f e c t on s e l f - c o n f i d e n c e and o v e r a l l l i f e more p o s i t i v e l y . F i n a l l y , p a t i e n t s l i v i n g i n the lower m a i n l a n d a r e a o f the p r o v i n c e r e p o r t e d fewer p h y s i o l o g i c a l problems, and r a t e d HPN's e f f e c t on body image more n e g a t i v e l y . Whether t h e s e r e s u l t s are s i m p l y t r e n d s o r a r e s t a t i s t i c a l l y s i g n i f i c a n t was not d e t e r m i n e d due t o the small numbers o f p a t i e n t s i n each group. PART 2: THE HEALTH PROFESSIONAL QUESTIONNAIRE  R e s u l t s The h e a l t h p r o f e s s i o n a l q u e s t i o n n a i r e was m a i l e d t o 19 known h e a l t h p r o f e s -s i o n a l s working w i t h HPN p a t i e n t s i n B.C. The 17 r e s p o n d e n t s i n c l u d e d 4 s p e c i a l i s t p h y s i c i a n s , 5 p h a r m a c i s t s , 7 n u r s e s , and 1 d i e t i c i a n . One p h y s i c i a n and one nurse from the above l i s t were m a i n l y i n v o l v e d as a d m i n i s t r a t o r s o f the HPN s e r v i c e i n B.C. Two r e s p o n d e n t s were a s s o c i a t e d w i t h S t . P a u l ' s H o s p i t a l , 4 w i t h Vancouver General H o s p i t a l , 5 w i t h B.C. C h i l d r e n ' s H o s p i t a l , and 3 with the U.B.C. H e a l t h S c i e n c e s C e n t r e H o s p i t a l . The p r o f e s s i o n a l s were asked f o r o p i n i o n s on a number o f t o p i c s and the r e s u l t s f o l l o w . - 98 -A. M e d i c a l C r i t e r i a f o r S u i t a b l e C a n d i d a t e s f o r HPN Most p r o f e s s i o n a l s f e l t t h a t age was not an i m p o r t a n t c r i t e r i o n f o r d e t e r m i n i n g e l i g i b i l i t y f o r HPN and t h a t p e o p l e from i n f a n t s to tho s e very o l d c o u l d be p o t e n t i a l c a n d i d a t e s . Medical c r i t e r i a f o r c a n d i d a t e s were those g e n e r a l l y a greed upon i n the l i t e r a t u r e w i t h the e x c e p t i o n o f c a n c e r p a t i e n t s , and p r e - o p e r a t i v e t h e r a p y (see p . 5 ) . 50% o f the group f e l t t h a t HPN as an a d j u n c t t h e r a p y f o r c a n c e r p a t i e n t s was not a p p r o p r i a t e and 64% c o n s i d e r e d HPN not s u i t a b l e t h e r a p y f o r p r e - o p e r a t i v e p a t i e n t s . The p r o f e s s i o n a l s were asked i f any o t h e r medical c o n d i t i o n p r e c l u d e d HPN f o r p a t i e n t s who would o t h e r w i s e meet the a d m i s s i o n c r i t e r i a . P s y c h i a t r i c d i s e a s e was not f e l t t o be a complete c o n t r a - i n d i c a t i o n i f adequate s u p e r v i s i o n and s a f e t y c o u l d be a s s u r e d . S i m i l a r l y , p h y s i c a l c o - o r d i n a t i o n d i f f i c u l t i e s were not a b s o l u t e c o n t r a - i n d i c a t i o n s i f a s s i s t a n c e f o r the p a t i e n t was a v a i l a b l e . S e n i l i t y was c o n s i d e r e d t o be more o f a problem, e s p e c i a l l y i f s e v e r e . Ten o f 15 r e s p o n d e n t s (67%) c o n s i d e r e d s e n i l i t y a c o n t r a - i n d i c a t i o n t o HPN t h e r a p y . O t h e r p o t e n t i a l c o n t r a - i n d i c a t i o n s l i s t e d were drug abuse and s e v e r e v i s u a l impairment. HPN was, f o r the most p a r t , t h o u g h t t o be a r e a s o n a b l e form o f t h e r a p y i f p a t i e n t s r e q u i r e d a t l e a s t 3 n u t r i t i o n a l i n f u s i o n s per week and t h e r a p y was e x p e c t e d t o c o n t i n u e a t l e a s t 3 months. - 99 -B. The Home S i t u a t i o n f o r HPN P a t i e n t s H e a l t h p r o f e s s i o n a l s were asked f o r o p i n i o n s on the home s i t u a t i o n o f any p o t e n t i a l c a n d i d a t e f o r HPN. 65% o f r e s p o n d e n t s (11 p e o p l e ) , s t a t e d t h a t acceptance by the family was e s s e n t i a l w h i l e the r e m a i n i n g 35% (6 p e o p l e ) f e l t t h a t i t was d e s i r a b l e . Thus, no one thought t h a t a c c e p t a n c e by the f a m i l y was not n e c e s s a r y . Physical assistance by f a m i l y members o r s i g n i f i c a n t o t h e r s was a l s o c o n s i d e r e d i m p o r t a n t . 29% o f p r o f e s s i o n a l s r a t e d t h i s as e s s e n t i a l and 71% as d e s i r a b l e . A number o f p e o p l e commented t h a t a s s i s t a n c e was e s p e c i a l l y i m p o r t a n t f o r the very young, the o l d , the h a ndicapped, and a t t i mes o f i l l n e s s . 82% o f r e s p o n d e n t s (14 p e o p l e ) t h o u g h t t h a t c a n d i d a t e s c o u l d l i v e alone, w h i l e 18% (3 p e o p l e ) s t a t e d t h a t t h i s s i t u a t i o n was perhaps p o s s i b l e . No one s t a t e d i t was not p o s s i b l e . Respondents were a l s o asked t o l i s t physical requirements of the home f o r any p o t e n t i a l HPN c a n d i d a t e . These r e q u i r e m e n t s i n c l u d e d c l e a n water, e l e c t r i c i t y , c l e a n work space, a r e f r i g e r a t o r , s t o r a g e space f o r equipment and s u p p l i e s , and the a b i l i t y t o communicate w i t h h e a l t h p r o f e s s i o n a l s (eg. a t e l e -phone) . C. P a t i e n t C h a r a c t e r i s t i c s Respondents were r e q u e s t e d t o c o n s i d e r two p a t i e n t c h a r a c t e r i s t i c s , intelligence and motivation. 71% o f p r o f e s s i o n a l s s t a t e d t h a t a t l e a s t average i n t e l l i g e n c e was r e q u i r e d by HPN p a t i e n t s , w h i l e 6% s t a t e d t h a t above average i n t e l l i g e n c e was r e q u i r e d and 24% t h a t the degree o f i n t e l l i g e n c e was - 100 -not i m p o r t a n t . M o t i v a t i o n was c o n s i d e r e d more i m p o r t a n t w i t h 76% (13 people ) c i t i n g h i g h m o t i v a t i o n as a re q u i r e m e n t . Only 4 pe o p l e l i s t e d moderate m o t i v a -t i o n as a c c e p t a b l e and no one tho u g h t m o t i v a t i o n was not i m p o r t a n t . D. HPN S e r v i c e O p i n i o n s were g a t h e r e d c o n c e r n i n g t he typ e o f HPN s e r v i c e t o B.C. p a t i e n t s t h a t s h o u l d be a v a i l a b l e . 88% o f the re s p o n d e n t s s u g g e s t e d t h a t HPN s h o u l d be a v a i l a b l e t o patients residing anywhere in the province, w h i l e 12% thought i t s h o u l d o n l y be a v a i l a b l e i n l a r g e c e n t e r s i n B.C. where r e s o u r c e s t a f f and easy f o l l o w up were a v a i l a b l e . When asked what the minimum standard for provided solutions s h o u l d be, 47% (8 pe o p l e ) responded t h a t t o t a l l y mixed s o l u t i o n s (minus u n s t a b l e i n g r e d i -e n t s ) were n e c e s s a r y , w h i l e 6 pe o p l e c o n s i d e r e d c o r e s o l u t i o n s adequate and 3 peop l e t h a t the degree o f s o l u t i o n p r e - m i x i n g s h o u l d depend on the p a t i e n t . I t was i n t e r e s t i n g , however, t h a t one p r o f e s s i o n a l p o i n t e d out t h a t v a r i a b i l i t y i n p r e - m i x i n g u n f a i r l y p e n a l i z e d p a t i e n t s who were i n t e l l i g e n t and d e x t r o u s . Delivery of solutions and supplies t o the p a t i e n t s ' home was thought t o be e s s e n t i a l by 41% (7 pe o p l e ) and d e s i r a b l e by 59%. Most r e s p o n d e n t s f e l t t h a t d e l i v e r i e s were r e q u i r e d e v e r y two weeks, a l t h o u g h a few s t a t e d t h a t monthly d e l i v e r i e s would be s u f f i c i e n t depending on s t o r a g e space. The q u e s t i o n r e g a r d i n g who s h o u l d supply solutions and supplies b r o u g h t a v a r i e d r e s p o n s e , w i t h 44% (7 re s p o n d e n t s ) f e e l i n g t h a t t h i s f u n c t i o n s h o u l d be p r o v i d e d by t he h o s p i t a l s . Reasons f o r t h i s c h o i c e i n c l u d e d q u i c k e r response t o s o l u t i o n changes, more f l e x i b i l i t y and b e t t e r f o l l o w up. Three p e o p l e thought a p r i v a t e - 101 -company s h o u l d p r o v i d e them, w i t h one person s u g g e s t i n g t h a t t h i s would be l e s s e x p e n s i v e . Another 3 pe o p l e thought t h a t a government agency would be b e s t s u i t e d f o r t h i s f u n c t i o n , and a f u r t h e r 3 p r o f e s s i o n a l s f e l t i t d i d not m a t t e r who p r o v i d e d s o l u t i o n s and s u p p l i e s as l o n g as i t was w e l l o r g a n i z e d , met p a t i e n t s ' needs and was c o s t e f f i c i e n t . Fo l low-up o f p a t i e n t s once d i s c h a r g e d from h o s p i t a l was a l s o c o v e r e d by the q u e s t i o n n a i r e . Respondents were asked t o i n d i c a t e who s h o u l d r e g u l a r l y see o u t p a t i e n t s on HPN. R e s u l t s are l i s t e d i n T a b l e 5-31. T a b l e 5-31. F o l l o w - u p o f HPN O u t p a t i e n t s by H e a l t h P r o f e s s i o n a l s R e g u l a r l y See P a t i e n t s Home V i s i t s P r o f e s s i o n a l # o f Yes P r . % # o f No P r . % # o f Yes P r . % No # o f P r . % S p e c i a l i s t P h y s i c i a n 16 94 1 6 0 0 17 100 General P r a c t i t i o n e r 10 62 6 38 0 0 17 100 Nurse 16 94 1 6 14 82 3 18 P h a r m a c i s t 12 71 5 29 7 41 10 59 D i e t i c i a n 4 24 13 76 - - - -S o c i a l Worker 2 12 15 88 11 65 6 35 N e a r l y a l l r e s p o n d e n t s agreed t h a t p a t i e n t s s h o u l d be f o l l o w e d by a s p e c i a l i s t p h y s i c i a n and a nurse . L e s s p e o p l e , but s t i l l a m a j o r i t y , s t a t e d t h a t a ge n e r a l p r a c t i t i o n e r and a p h a r m a c i s t s h o u l d be i n v o l v e d , w h i l e o n l y a few r e s p o n d e n t s c o n s i d e r e d t h e r e was a need f o r a d i e t i c i a n o r s o c i a l worker t o be i n v o l v e d . - 102 -Health professionals were requested to indicate whether home v i s i t s ei ther pre or post-discharge, were required. Results also appear in Table 5-31. I t was agreed that physicians ( spec ia l i s t s or general p rac t i t ioners) were not required to make home v i s i t s . However, 82% (14 professionals) thought a nurse should v i s i t the HPN pa t ien t ' s home. Six of 7 nurses surveyed, considered th is the i r r o le . General ly , respondents f e l t that the v i s i t should take place pre-discharge and ear ly in the post-discharge per iod. Only 3 people thought there was need for regular home v i s i t s by the nurse. Seven respondents stated that a pharmacist should make a home v i s i t with 4 of the 5 pharmacists surveyed considering th is important. Only 2 of these thought more than one v i s i t was necessary. A v i s i t by the soc ia l worker was f e l t to be required by 65%. The timing of soc ia l worker v i s i t s was recommended to be determined by the patient need. Respondents were unanimous in choosing an outpatient c l i n i c of a hospital as the ideal place for fol low-up v i s i t s to occur. This locat ion was preferred over the s p e c i a l i s t phys ic ian 's or general p rac t i t i one r ' s o f f i c e . When asked how th is arrangement would af fect pat ients l i v i n g outside the lower mainland or V i c t o r i a areas, a var ie ty of responses were given. Nevertheless, there was general agreement that pat ients must be seen regular ly and th is could require pat ients to make t r i p s to the large centers in order to see the i r s p e c i a l i s t . It was also a common comment that good communications between the local health professionals car ing for the HPN pat ient and those in the large centers would be pa r t i cu la r l y important, as also would communications between the patients and the profess ionals . - 103 -For emergent problems, i t was a gen e r a l consensus t h a t the c o n t a c t p r o f e s -s i o n a l would v a r y a c c o r d i n g t o the emergency, a l t h o u g h u s u a l l y i t would be the s p e c i a l i s t o r n u r s e . E. P a t i e n t S e l e c t i o n and T r a i n i n g Patient selection-was c o n s i d e r e d t o be the r e s p o n s i b i l i t y o f the p h y s i c i a n and nurse by 100% o f the r e s p o n d e n t s . More than 50% f e l t t h a t a t t i mes the p h a r m a c i s t , d i e t i c i a n , s o c i a l worker, p s y c h i a t r i s t o r p s y c h o l o g i s t s h o u l d a l s o be i n v o l v e d . 88% (15 p e o p l e ) s t a t e d patient training s h o u l d take p l a c e o n l y a t d e s i g n a t e d t e a c h i n g h o s p i t a l s i n the p r o v i n c e , and a l l f e l t t h a t the nurse s h o u l d i d e a l l y p a r t i c i p a t e i n p a t i e n t t r a i n i n g . P h a r m a c i s t i n v o l v e m e n t i n t r a i n i n g was c o n s i d e r e d n e c e s s a r y by 82% o f r e s p o n d e n t s and p h y s i c i a n i n v o l v e -ment by 53%. Only 2 p e o p l e thought a d i e t i c i a n s h o u l d p a r t i c i p a t e i n p a t i e n t t r a i n i n g . I t i s i n t e r e s t i n g t h a t both t h e s e p r o f e s s i o n a l s a r e i n v o l v e d w i t h the HPN program a t UBC HSC H o s p i t a l , where a d i e t i c i a n i s p a r t o f the HPN p r o f e s -s i o n a l team. There was t o t a l agreement t h a t t r a i n i n g s h o u l d c o v e r a d e s c r i p t i o n o f the d i s e a s e , b a s i c s o f p a r e n t e r a l n u t r i t i o n t h e r a p y , p e r t i n e n t anatomy, c a r e o f the c a t h e t e r or g r a f t , p r e p a r a t i o n o f s o l u t i o n s , a d m i n i s t r a t i o n t e c h n i q u e s , and u n d e r s t a n d i n g o f p o t e n t i a l problems. A l s o , s e v e r a l p r o f e s s i o n a l s c o n s i d e r e d o r d e r i n g and s t o r a g e o f s u p p l i e s , d i e t a r y i s s u e s , and s o c i a l a s p e c t s o f HPN th e r a p y , as b e i n g a r e a s t h a t s h o u l d be c o v e r e d . 65% o f p r o f e s s i o n a l s thought t h a t t r a i n i n g would u s u a l l y take 2 to 4 weeks w h i l e the o t h e r 35% f e l t a s h o r t e r p e r i o d o f 1 to 2 weeks would s u f f i c e . T r a i n i n g a back-up person i n HPN pr o c e d u r e s was c o n s i d e r e d d e s i r a b l e by 76% and e s s e n t i a l by 24%. A l l t h o s e who c o n s i d e r e d i t e s s e n t i a l r e f e r r e d t o - 104 -s i t u a t i o n s where HPN was a t h e r a p y f o r c h i l d r e n . C o n t a c t w i t h o t h e r HPN p a t i e n t s was c o n s i d e r e d d e s i r a b l e by 88% o f p e o p l e , e s s e n t i a l by one person and not r e q u i r e d by a n o t h e r . When asked i f c o n t i n u i t y o f c a r e i n and o u t o f the h o s p i t a l was e s s e n t i a l , 88% o f r e s p o n d e n t s s t a t e d i t was. Reasons f o r t h i s i n c l u d e d maintenance o f q u a l i t y c a r e , c o n s i s t e n c y o f c a r e , maintenance o f p a t i e n t c o n f i d e n c e w i t h h e a l t h p r o f e s s i o n a l s and the a b i l i t y t o f o l l o w o b j e c t i v e s s e t i n h o s p i t a l s . F. C u r r e n t S i t u a t i o n i n B.C. Respondents t o the h e a l t h p r o f e s s i o n a l q u e s t i o n n a i r e were asked t o r a t e the c u r r e n t HPN s e r v i c e i n B.C. R e s u l t s are shown i n T a b l e 5-32. T a b l e 5-32. R a t i n g o f the C u r r e n t HPN S i t u a t i o n i n B.C.  A t t r i b u t e Good F a i r Poor # o f Pr. % # o f P r . % # o f Pr. % P a t i e n t S e l e c t i o n 3 6 40 8 53 1 7 T r a i n i n g 12 71 4 24 1 6 Follow-Up 2 12 12 71 3 18 P s y c h o s o c i a l S u p p o r t 3 1 7 10 67 4 27 H i g h l y A c c e p t a b l e A c c e p t a b l e Not A c c e p t a b l e Degree o f S o l u t i o n P r e - M i x i n g 4 24 9 53 4 24 D e l i v e r y 7 41 9 53 1 6 - 105 -T a b l e 5-32. R a t i n g o f the C u r r e n t HPN S i t u a t i o n i n B.C. (Cont'd.) Always Met U s u a l l y Met Seldom Met P a t i e n t Need f o r HPN 2 12 9 53 6 35 Low A c c e p t a b l e High C o m p l i c a t i o n Rate ( C a t h e t e r R e l a t e d ) 1 5 4 29 10 71 0 0 C o m p l i c a t i o n Rate (Not C a t h e t e r R e l a t e d ) 0 4 33 8 67 0 0 I n c i d e n c e o f P s y c h o s o c i a l Problems^ 2 18 9 82 0 0 L i t t l e D i f f i c u l t y A t t r i b u t e # o f P r . % Some D i f f i c u l t y # o f P r . % G r e a t Deal o f D i f f i c u l t y # o f P r . % B u r e a u c r a t i c and A d m i n i s t r a t i v e Requi rements 1 6 12 71 4 24 a. N=15 b. N=14 c. N=12 d. N = l l Patient selection was r a t e d good by 40% (6 p e o p l e ) , f a i r by 53%, and poor by 7%. The poor r a t i n g was from a p r o f e s s i o n a l a s s o c i a t e d w i t h C h i l d r e n ' s H o s p i t a l who c r i t i c i z e d t he l a c k o f a formal HPN program f o r c h i l d r e n . Training was c o n s i d e r e d good by 71%, w h i l e 24% f e l t i t was o n l y f a i r , and 6% t h a t i t was poor. - 106 -Patient follow-up was r a t e d l o w e r . 71% (12 p r o f e s s i o n a l s ) found i t f a i r , and 18% r a t e d i t poor. Only 12% (2 people ) c o n s i d e r e d p a t i e n t f o l l o w - u p t o be good. Some o f the comments r e l a t e d t o t h i s were, t h a t o r g a n i z e d f o l l o w - u p i n t h e home was v i r t u a l l y n o n - e x i s t e n t , t h a t m e d i c a l l y s t a b l e p a t i e n t s were o n l y i n f r e q u e n t l y seen and t h a t o u t s i d e o f the p h y s i c i a n ' s o f f i c e f o l l o w - u p was l a c k i n g . Psychosocial support o f p a t i e n t s was a l s o g i v e n a low r a t i n g w i t h 67% (10 o f 15 re s p o n d e n t s ) r a t i n g i t as f a i r , 27% as poor, and o n l y 7% (1 person) r a t i n g i t good. Two p r o f e s s i o n a l s s t a t e d t h a t p a t i e n t s had needed t h i s type o f hel p but r e s o u r c e s were u n a v a i l a b l e . Another person s u g g e s t e d t h a t more n u r s i n g i n p u t was needed and a f u r t h e r p e r s o n t h a t u n l e s s the p a t i e n t s p e c i f i c a l l y t r i e d t o a c c e s s p s y c h o s o c i a l h e l p , none was a v a i l a b l e . The degree to which solutions are pre-mixed f o r p a t i e n t s was c o n s i d e r e d u n a c c e p t a b l e by 24% o f r e s p o n d e n t s , a c c e p t a b l e by 53% and h i g h l y a c c e p t a b l e by 24%. P r o f e s s i o n a l s who found the s i t u a t i o n u n a c c e p t a b l e s t a t e d t h a t p a t i e n t s who mixed t h e i r own s o l u t i o n s spend too much time d o i n g so, r i s k i n f e c t i o n , and t h a t the s i t u a t i o n s h o u l d be c o r r e c t e d b e f o r e a "major d i s a s t e r o c c u r s " . A nother p r o f e s s i o n a l r e f e r r e d t o the paper by Howard t h a t i n d i c a t e d t h a t s o l u t i o n m i x i n g was h i g h on the p a t i e n t s ' p r i o r i t y l i s t f o r HPN s e r v i c e (Howard, 1986). The delivery situation was f o r t h e most p a r t t hought t o be s a t i s f a c t o r y w i t h 41% (7 pe o p l e ) r a t i n g i t as h i g h l y a c c e p t a b l e , 53% (9 people ) as a c c e p t a b l e and o n l y 1 per s o n r a t i n g i t not a c c e p t a b l e . Two pe o p l e s t a t e d t h a t T r a v a c a r e p r o v i d e s e x c e l l e n t d e l i v e r y s e r v i c e and ano t h e r t h a t KDS's s e r v i c e was j u s t adequate. - 107 -P r o f e s s i o n a l assessment o f the degree t o which t he need for HPN service was met i n the p r o v i n c e v a r i e d . 12% s t a t e d i t was always met, 53% t h a t i t was u s u a l l y met and 35% t h a t i t was seldom met. Two re s p o n d e n t s who r a t e d i t seldom met, were r e f e r r i n g t o the s i t u a t i o n f o r c h i l d r e n , w h i l e a n o t h e r person q u e s t i o n e d t he a v a i l a b i l i t y o f HPN f o r p a t i e n t s r e s i d i n g o u t s i d e the lower m a i n l a n d and V i c t o r i a a r e a s . One person from the M i n i s t r y o f H e a l t h s t a t e d t h a t no p e r s o n had e v e r been r e f u s e d HPN t h e r a p y f o r monetary r e a s o n s . Complication rate, both c a t h e t e r r e l a t e d and c a t h e t e r u n r e l a t e d , was c o n s i d e r e d e i t h e r low o r a c c e p t a b l e by a l l r e s p o n d e n t s . The i n c i d e n c e o f psychosocial problems was thought t o be a c c e p t a b l e by 82% o f pe o p l e and low by t he r e s t . Bureaucratic and administrative requirements were r a t e d as c a u s i n g some d i f f i c u l t y by 71% (12 p e o p l e ) , a g r e a t deal o f d i f f i c u l t y by 24% (4 people) and l i t t l e d i f f i c u l t y by one p e r s o n . Some o f the problems c i t e d i n t h i s area were the m u l t i p l e s o u r c e s o f s u p p l i e s , t h e v a r i a t i o n between p a t i e n t s , t he poor communication between t he KDS departments and the problems w i t h back o r d e r s o f s u p p l i e s . P r o f e s s i o n a l s were a l s o asked i f t h e r e was a need to standardize HPN a c t i v i t i e s i n B.C. The response was an overwhelming y e s . 81% o f res p o n d e n t s f e l t t h a t t r a i n i n g s h o u l d be s t a n d a r d i z e d , 100% t h a t s e r v i c e s h o u l d be s t a n d a r -d i z e d , and 94% t h a t equipment s h o u l d be so. F i n a l l y , h e a l t h p r o f e s s i o n a l s were g i v e n an o p p o r t u n i t y t o l i s t needed changes i n the HPN s i t u a t i o n i n the p r o v i n c e . A summary o f t h e s e i d e a s f o l l o w s . E i g h t p r o f e s s i o n a l s c i t e d the need t o s t a n d a r d i z e the s e r v i c e i n c l u d i n g t h e t r a i n i n g i n the h o s p i t a l , t h e s e r v i c e p r o v i d e d , and the equipment - 108 -used. S i x p e o p l e s t r e s s e d the need to s u p p l y a l l HPN p a t i e n t s w i t h pre-mixed s o l u t i o n s . I n c r e a s e d f o l l o w - u p c a r e was c o n s i d e r e d i m p o r t a n t by s e v e r a l p e o p l e who s u g g e s t e d t h a t t h e r e s h o u l d be: home v i s i t a t i o n by a n u r s e , p h a r m a c i s t and s o c i a l worker; f o l l o w - u p c e n t e r s o r h o s p i t a l o u t - r e a c h programs a c r o s s the p r o v i n c e ; and improved c l i n i c a l and p s y c h o s o c i a l f o l l o w - u p . S e v e r a l p r o f e s -s i o n a l s f e l t t h a t a d m i n i s t r a t i v e changes were needed. These i n c l u d e d the need f o r a person i n charge o f a l l programs and a r e p r e s e n t a t i v e on government committees, p r o p e r f u n d i n g o f HPN as a program d i s t i n c t from KDS, the need f o r a d i r e c t i o n s tatement from the M i n i s t r y o f H e a l t h , and the need t o f i n d cheaper s o u r c e s o f HPN. L a s t l y , 2 p e o p l e a d d r e s s e d the need f o r improved communications between the h e a l t h p r o f e s s i o n a l s c a r i n g f o r the p a t i e n t , and a n o t h e r person s t r e s s e d the need f o r HPN f o r more c h i l d r e n i n the p r o v i n c e . PART 3: CHART DATA  Vancouver General H o s p i t a l Vancouver G e n e r a l H o s p i t a l has t r a i n e d 14 p a t i e n t s t o s e l f - a d m i n i s t e r HPN s i n c e 1975. A v a i l a b l e data show t h a t 12 o f t h e s e p a t i e n t s have accounted f o r 47.5 y e a r s o f t o t a l t h e r a p y . I n f o r m a t i o n on the r e m a i n i n g 2 p a t i e n t s was i n s u f f i c i e n t t o d e t e r m i n e when HPN was d i s c o n t i n u e d . F i v e p a t i e n t s are s t i l l on the program, 8 have had HPN d i s c o n t i n u e d , and 1 p e r s o n has d i e d . I n t r a - v e n o u s a c c e s s i n 4 p a t i e n t s was v i a g r a f t , and the r e m a i n i n g 10 p a t i e n t s had c e n t r a l venous c a t h e t e r s o f the Hickman o r B r o v i a c t y p e . C a t h e t e r l i f e was on average 26.5 months f o r 10 removed c a t h e t e r s . Four o f t h e s e - 109 -c a t h e t e r s were removed because the t h e r a p y was no l o n g e r needed, s e p s i s was the r e a s o n f o r removal i n 4 o t h e r s , and the f i n a l 2 c a t h e t e r s were removed because o f p e r f o r a t i o n and d i s l o d g e m e n t . E i g h t p a t i e n t s were male and 6 female w i t h ages r a n g i n g from 28 t o 70 y e a r s and the mean b e i n g 39.8 y e a r s . A l l but 2 p a t i e n t s l i v e d i n the lower mainland a r e a o f the p r o v i n c e . The r e a s o n f o r HPN t h e r a p y i n 10 p a t i e n t s was Crohn's d i s e a s e and i n the r e m a i n i n g 4 was, r e s p e c t i v e l y , u l c e r a t i v e c o l i t i s , i n f l a m -matory bowel d i s e a s e , r a d i a t i o n e n t e r i t i s and unknown. E i g h t p a t i e n t s r e c e i v e d pre-mixed c o r e s o l u t i o n s and the r e s t mixed t h e i r own. E l e v e n p a t i e n t s a d m i n i s t e r e d HPN s o l u t i o n s d a i l y , and the o t h e r s , 5 days per week. B.C. C h i l d r e n ' s H o s p i t a l , Vancouver Data from C h i l d r e n ' s H o s p i t a l show t h a t s i n c e 1973 p a r e n t e r a l n u t r i t i o n as a t h e r a p y f o r c h i l d r e n w i t h i n the h o s p i t a l has been s t e a d i l y i n c r e a s i n g ( T a b l e 5-33). Demand f o r home t h e r a p y f o r a small number o f t h e s e c h i l d r e n has a l s o been r i s i n g . T a b l e 5-33. P a r e n t e r a l N u t r i t i o n a t C h i l d r e n ' s H o s p i t a l 1973-1985  Year # o f P t . # o f P t . Days Avg. # o f Days per P t . 1973 8 316 39.5 1974 27 766 28.4 1975 27 942 34.9 1976 29 998 34.4 1977 91 1399 15.4 1978 99 1680 17.0 1979 121 1970 16.2 1980 1981 115 1815 15.8 1982 1983 156 2225 14.3 1984 204 2465 12.1 1985 277 3779 13.6 - 110 -C o n c l u d i n g Comments U n f o r t u n a t e l y , a t the time o f w r i t i n g , c h a r t d a t a f o r the p a t i e n t s t r a i n e d t o a d m i n i s t e r HPN a t S t . P a u l ' s H o s p i t a l , Vancouver, were not a v a i l a b l e . Review o f t h e s e d a t a a t a l a t e r date s h o u l d , however, be most u s e f u l . F o r example, i t w i l l h o p e f u l l y show outcomes f o r a l l p a t i e n t s begun on HPN t h e r a p y a t S t . P a u l ' s and a l s o p r o v i d e i n f o r m a t i o n r e g a r d i n g c a t h e t e r l i f e , s e p s i s r a t e and h o s p i t a l i -z a t i o n time f o r a l a r g e r number o f HPN p a t i e n t s than t h a t p r o v i d e d by the q u e s t i o n n a i r e r e s p o n d e n t s . - I l l -CHAPTER 6: DISCUSSION AND CONCLUSIONS This thesis has generated a great deal of descriptive data regarding the home parenteral nutrit ion program offered to Br i t ish Columbians. However, because of the small number of patients and professionals surveyed and the limited amount of chart data available, i t is d i f f i cu l t to make definit ive comments regarding the successes and problems of the system. Nevertheless, when this large body of information is s i f ted, a variety of general themes emerge. In this f inal chapter of the thesis, an attempt wi l l be made to c lar i fy these themes. Cl in ica l Results Results from the patient survey, professional survey, and chart data a l l appear to indicate that patients who have received HPN in B.C. have achieved c l in ica l results at least equivalent to those reported in the l i terature from other centers (Table 2-1). For example, catheter l i f e was reported on average by the patient survey to be 15.1 months, and by Vancouver General Hospital chart data 26.5 months, while l i terature values were 6 to 22 months. The percentage of total time spent in hospital as reported by the patients during one year of HPN therapy was 3%, lower than the 6% and 13% cited (Table 2-1). Further, the average number of HPN related hospital days per year, 9.7 days (Table 5-4) and the number of physiological complaints (Table 5-6) reported by B.C. patients were consistent with, or lower than, those reported by the Seattle group (11.7 HPN related hospital days) (Robb, 1983). Data also - 112 -i n d i c a t e t h a t o l d e r p a t i e n t s and those l i v i n g o u t s i d e t he lower mainland a r e a had more p h y s i o l o g i c a l problems than o t h e r p a t i e n t s ( T a b l e 5-15, T a b l e 5-20). The e f f e c t o f age appears t o be q u i t e d r a m a t i c w i t h o n l y 20% o f p a t i e n t s under 30 y e a r s o f age c o m p l a i n i n g o f more than 5 p h y s i o l o g i c a l problems, compared w i t h 75% o f t h o s e o v e r 50 y e a r s . T h i s t r e n d c o u l d a l s o be e x p e c t e d i n the gen e r a l p o p u l a t i o n not on HPN t h e r a p y . The ar e a o f r e s i d e n c e e f f e c t may be due t o b e t t e r a c c e s s to h e a l t h c a r e i n the m e t r o p o l i t a n a r e a s , a l t h o u g h i t cannot be d e f i n i t i v e l y p roved from the a v a i l a b l e d a t a . N e v e r t h e l e s s , t h e s e f i n d i n g s may be i m p o r t a n t f o r h e a l t h p r o f e s s i o n a l s c o n s i d e r i n g p o t e n t i a l HPN c a n d i d a t e s . B.C.'s HPN Program A. P a t i e n t S e l e c t i o n S e l e c t i o n o f p a t i e n t s f o r HPN t h e r a p y u s u a l l y appears t o be a p p r o p r i a t e from the h e a l t h p r o f e s s i o n a l s ' p o i n t o f view, as w e l l as from the c l i n i c a l r e s u l t s a c h i e v e d . However, w h i l e t h r e e o f the p r o f e s s i o n a l s s u r v e y e d thought patients l i v i n g alone were o n l y " p o s s i b l y a p p r o p r i a t e " c a n d i d a t e s , the r e s u l t s o f the p a t i e n t survey showed t h a t l i v i n g a l o n e d i d not a d v e r s e l y e f f e c t outcome. The i s s u e o f whether cancer patients c o u l d be p o t e n t i a l c a n d i d a t e s f o r HPN t h e r a p y i s un d e c i d e d a t t h i s time, as t o date i n B.C., t h e r e has been no r e q u e s t f o r HPN t h e r a p y f o r a p a t i e n t whose need was a r e s u l t o f c a n c e r . Because the t r e n d i n the U n i t e d S t a t e s i s c l e a r , w i t h c a n c e r b e i n g the most f r e q u e n t r e a s o n f o r HPN t h e r a p y , i t i s r e a s o n a b l e t o assume t h a t t h i s i s s u e w i l l - 113 -eventually be ra ised in B.C. The professional questionnaire indicated that respondents were evenly divided on whether HPN therapy would or would not be appropriate for B.C. cancer pat ients . The ult imate decision w i l l , of course, be made by the program's administrators, based on the ind iv idual case. However, at that time, i t w i l l also be important to consider the overal l question with regard to the moral and eth ica l issues that i t r a i ses , and also the f inanc ia l imp l ica t ions . For example, the benef i ts of HPN therapy to any potent ial cancer pat ient need to be assessed in terms of increased qual i ty of l i f e as well as increased quantity of l i f e . F i n a l l y , in the area of pat ient se lec t i on , i s the concern voiced by a number of sources, that the need for HPN therapy in children i s at present not s u f f i c i e n t l y met. A number of adolescents have already received HPN therapy, but more w i l l become candidates in the near fu ture, as w i l l younger ch i l d ren . B. Train ing Train ing of pat ients appears to be well done, with few complaints and many praises being given by pat ients and pro fess iona ls . 82% of professionals would apparently l i k e to see a pharmacist involved with the t r a i n i n g , ye t , th is may or may not current ly take p lace, depending on the hospital involved. C. HPN Service The actual HPN service provided to pat ients in B.C. seems beset with d i f f i c u l t i e s . A recent report in the l i t e ra tu re gives a s tar t ing point for - 114 -d i s c u s s i o n o f t h i s t o p i c (Howard, 1986). T h i s paper r e p o r t e d the r e s u l t s of the Oley F o u n d a t i o n ' s s u r v e y , o f 172 HPN p a t i e n t s i n the U n i t e d S t a t e s , which asked p a t i e n t s t o r a t e the importance o f a v a r i e t y o f HPN s e r v i c e s o f f e r e d by v a r i o u s HPN programs. The r e s u l t s i n d i c a t e d t h a t s e r v i c e s o f g r e a t e s t importance t o the p a t i e n t were 1) p r o v i s i o n o f HPN s o l u t i o n s pre-mixed by a pharmacy, 2) home d e l i v e r y o f s u p p l i e s , 3) reimbursement management and, 4) an i n i t i a l n u r s i n g v i s i t when f i r s t d i s c h a r g e d home and the a v a i l a b i l i t y o f a nurse f o r a r o u n d - t h e - c l o c k e m e r g e n c i e s . Item 3 i s not an i s s u e i n Canada and item 2, home d e l i v e r y o f s u p p l i e s , i s c u r r e n t l y i n p l a c e i n B.C. and f u n c t i o n i n g i n a s a t i s f a c t o r y manner. The o t h e r items w i l l be d i s c u s s e d below. In B.C., t h e v a r i a b l e a v a i l a b i l i t y o f pre-mixed solutions i s seen as a s e r i o u s f a u l t o f the program from both the h e a l t h p r o f e s s i o n a l s ' and p a t i e n t s ' p o i n t o f view. P r o f e s s i o n a l s r e p o r t e d c o n c e r n s about t he s a f e t y o f home m i x i n g , and the amount o f time i t r e q u i r e d f o r a p a t i e n t t o pre-mix. Two p a t i e n t s s u r v e y e d , e x p r e s s e d t h e i r c o n c e r n and f r u s t r a t i o n w i t h the p r e s e n t v a r i a b l e system. One o f t h e s e p a t i e n t s o u t l i n e d t he a n x i e t y c r e a t e d by not l e a r n i n g i f i t would be n e c e s s a r y t o t o t a l l y mix the s o l u t i o n s u n t i l j u s t p r i o r t o d i s c h a r g e home. In S e a t t l e , p a t i e n t s i n t h e p a s t have a l l been r e q u i r e d t o mix t h e i r own s o l u t i o n s ( u n l e s s v e r y unusual c i r c u m s t a n c e s e x i s t e d ) . The s t a t e d reasons were t o promote independence and a sense o f worth, t o p r o v i d e s t r u c t u r e t o the p a t i e n t ' s r o u t i n e , and t o reduce c o s t s . More r e c e n t l y , however, c o s t s o f p r e -- 115 -m i x i n g have f a l l e n and more p a t i e n t s are now r e c e i v i n g pre-mixed s o l u t i o n s . V a l i d i t y o f t h e o t h e r c i t e d reasons f o r p a t i e n t m i x i n g o f HPN s o l u t i o n s ( p r o m o t i n g independence and s e l f - w o r t h , and p r o v i d i n g s t r u c t u r e ) do not appear t o be s u p p o r t e d by the 01ey F o u n d a t i o n ' s f i n d i n g s . The r e s u l t s o f the p a t i e n t survey i n d i c a t e t h a t the time r e q u i r e d to mix s o l u t i o n s may be an i m p o r t a n t r e a s o n f o r p r o v i d i n g pre-mixed HPN s o l u t i o n s . Many p a t i e n t s r e p o r t e d t h a t they were not a b l e t o engage i n s o c i a l a c t i v i t i e s f o r l a c k o f time and, as a r e s u l t , the p s y c h o s o c i a l i n t e r f e r e n c e index s c o r e was h i g h e r f o r p a t i e n t s r e q u i r i n g more than 80 hours per week to p r e p a r e and a d m i n i s t e r HPN s o l u t i o n s . A c t u a l l y , because the m a j o r i t y o f t h i s time i s taken d u r i n g the n i g h t - t i m e a d m i n i s t r a t i o n o f s o l u t i o n s , the p r e - m i x i n g o f s o l u t i o n s c a n n o t g r e a t l y r e duce the o v e r a l l time HPN r e q u i r e s . N e v e r t h e l e s s , the e x t r a o n e - h a l f t o one hour per day f r e e d , f o r o t h e r a c t i v i t i e s , would be most welcome, g i v e n the demands p l a c e d on any one HPN p a t i e n t . D. F o l l o w - u p T a b l e 5-31 shows t h a t 94% o f h e a l t h p r o f e s s i o n a l s f e e l t h a t a nurse s h o u l d see HPN p a t i e n t s a f t e r d i s c h a r g e from the h o s p i t a l , and t h a t 71% f e e l t h a t a p h a r m a c i s t a l s o s h o u l d . Home v i s i t s by a n u r s e , a s o c i a l worker, and a pharma-c i s t were a l s o c o n s i d e r e d n e c e s s a r y by 82%, 65% and 41% o f p r o f e s s i o n a l s , r e s p e c t i v e l y . The l i t e r a t u r e a l s o i n d i c a t e s the importance o f good f o l l o w - u p c a r e , e s p e c i a l l y d u r i n g the i n i t i a l p r e - d i s c h a r g e p e r i o d when p a t i e n t s and t h e i r f a m i l i e s a r e making the a d j u s t m e n t s t o t h e i r l i v e s t h a t HPN t h e r a p y r e q u i r e s - 116 -( M a c R i t c h i e , 1978; P r i c e , 1979; Ladefo g e d , 1980; G u l l e d g e , 1980; R o b i n o v i t c h , 1981). T h i s l e v e l o f f o l l o w - u p i s c l e a r l y not p r o v i d e d i n B.C. Alth o u g h the s i t u a t i o n i s v a r i a b l e , few o u t p a t i e n t s have c o n t i n u i n g c o n t a c t w i t h h e a l t h p r o f e s s i o n a l s a s i d e from t h e i r s p e c i a l i s t p h y s i c i a n , whom they meet i n the o f f i c e . The HPN h o s p i t a l nurses may have l i m i t e d t e l e p h o n e c o n t a c t w i t h the p a t i e n t , b ut none sees t h e p a t i e n t a t home. P h a r m a c i s t s a r e almost e n t i r e l y e x c l u d e d from o u t p a t i e n t c o n t a c t and t h e r e i s no s o c i a l worker i n v o l v e d with any o f t he h o s p i t a l HPN programs. How t h i s s i t u a t i o n a f f e c t s p a t i e n t outcome i s i m p o s s i b l e t o say p r e c i s e l y . A n e c d o t a l d a t a , however, show t h a t f o r many p a t i e n t s , a l a c k o f good f o l l o w - u p c a r e has caused problems. F o r example, one p a t i e n t s t a t e d i t was not c l e a r whom to c o n t a c t when t h e r e were problems a t home, and an o t h e r t h a t the f i r s t few months o f t h e r a p y were e x t r e m e l y d i f f i c u l t . Two p a t i e n t s r e p o r t e d t h a t i t was very d i f f i c u l t t o o r g a n i z e t h e i r home s i t u a t i o n f o r a p p r o p r i a t e s t o r a g e o f s u p p l i e s and m i x i n g o f s o l u t i o n s , and t h a t they were g i v e n no a s s i s t a n c e w i t h i t . One person d e s c r i b e d t h e need f o r a back-up person t o h e l p mix and a d m i n i s t e r s o l u t i o n s a t times o f i l l n e s s because the f a m i l y was unable and u n w i l l i n g t o f i l l t h i s r o l e due t o t h e i r f e a r o f the s i t u a t i o n . Another person d e s c r i b e d t a k i n g s h o r t c u t s w i t h c l e a n i n g and measuring o f e l e c t r o l y t e s . T h i s problem seems t o be s u b s t a n t i a t e d by the f o l l o w - u p study done by L o u i e which showed t h a t even where p a t i e n t s were aware o f c o r r e c t a d m i n i s t r a t i o n p r o c e d u r e s , they d i d not always f o l l o w them ( L o u i e , 1983). - l i r -L a s t l y , c h a r t data from VGH revealed several s i t u a t i o n s where pa t i e n t s had u n i l a t e r a l l y changed t h e i r HPN s o l u t i o n s . One p a t i e n t stopped completely, while another discontinued the f a t s o l u t i o n s and only reported i t when c l i n i c a l symptoms occurred. A l l t h i s information would appear to i n d i c a t e that improved follow-up care by health p r o f e s s i o n a l s would b e n e f i t at l e a s t a part of the HPN p a t i e n t population and r e s u l t i n improved outcomes f o r these people. E. Costs and B e n e f i t s Cost of HPN i s high as i n d i c a t e d by Table 3-1. The 1986 operating cost f o r 24 p a t i e n t s was $702,660. Ten of these p a t i e n t s s e l f - m i x t h e i r s o l u t i o n s , reducing the cost to the B.C. M i n i s t r y of Health to $21,924/patient/year, from $28,971 i f they had been supplied with core s o l u t i o n s or $36,540 with completely pre-mixed s o l u t i o n s . Thus, j u s t i n c r e a s i n g the s o l u t i o n ' s degree of pre-mixture to core f o r these 10 p a t i e n t s would increase the t o t a l annual costs by $70,470 to $773,130. The cost of HPN i n the province i s d e f i n i t e l y r i s i n g . Each ye a r , more p a t i e n t s are added and, i n the near f u t u r e , i t i s c e r t a i n t h a t more c h i l d r e n w i l l be i n c l u d e d . By 1988, i t i s l i k e l y t h a t the t o t a l HPN annual operating budget w i l l approach one m i l l i o n d o l l a r s . As mentioned e a r l i e r i n Chapter 3, these costs do not i n c l u d e costs of t r a i n i n g p a t i e n t s i n the h o s p i t a l . Thus, with the number of p a t i e n t s i n c r e a s i n g i n c e r t a i n h o s p i t a l s , i t i s questionable whether a l l h o s p i t a l s w i l l continue to absorb the costs without r e q u i r i n g that HPN be defined as a separate h o s p i t a l program i n v o l v i n g separate f i n a n c i a l c o n s i d e r a t i o n . - 118 -A l t h o u g h i t c o s t s the B.C. M i n i s t r y o f H e a l t h a s u b s t a n t i a l amount o f money t o run the HPN program, i t i s r e a s o n a b l e t o assume t h a t f a i l u r e t o p r o v i d e such s e r v i c e s would r e s u l t i n a h i g h e r o v e r a l l c o s t due t o h o s p i t a l i z a t i o n s and o t h e r forms o f medical c a r e r e q u i r e d by p a t i e n t s now r e c e i v i n g HPN. What the d i f f e r -ence i n c o s t would a c t u a l l y be i s i m p o s s i b l e t o p r e d i c t , g i v e n the a v a i l a b l e d a t a . N e v e r t h e l e s s , a r e p o r t by Detsky i n 1986, i n d i c a t e d t h a t the HPN program c e n t e r e d a t the T o r o n t o General H o s p i t a l from 1970-1982, and p r o v i d i n g s e r v i c e t o 74 p a t i e n t s , r e s u l t e d i n an e s t i m a t e d n e t s a v i n g i n h e a l t h c a r e c o s t s , o v e r 12 y e a r s , o f $19,232 (1981-82 d o l l a r s ) per p a t i e n t or ( $ l , 6 0 6 / p a t i e n t / y e a r ) . I n c r e a s e d s u r v i v a l time a d j u s t e d f o r q u a l i t y o f l i f e was 3.3 y e a r s , compared w i t h a l t e r n a t i v e t r e a t m e n t o f p a t i e n t s i n h o s p i t a l w i t h i n t e r m i t t e n t n u t r i t i o n a l s u p p o r t where needed ( D e t s k y , 1986). T h i s a d j u s t e d measurement o f i n c r e a s e d s u r v i v a l time i n v o l v e d a complex c a l c u l a t i o n which attempted t o make a compari-son between p e r i o d s o f s u r v i v a l i n d i f f e r e n t s t a t e s o f h e a l t h . F o r example, one y e a r o f l i f e on HPN r a t e d by the p a t i e n t as h a v i n g 80% o f the v a l u e o f one y e a r i n good h e a l t h was c o n s i d e r e d t o be 0.8 y e a r s f o r t h i s c a l c u l a t i o n . These r e s u l t s were q u a l i f i e d by the f a c t t h a t i n no case was c a n c e r the reason f o r HPN t h e r a p y . The $1,606 per p a t i e n t / y e a r s a v i n g c a l c u l a t e d by Detsky would r e p r e s e n t a p p r o x i m a t e l y 10% o f the o v e r a l l c o s t o f HPN t h e r a p y , and i s a r e s u l t o f the modest e s t i m a t e o f a l t e r n a t i v e m e d i c a l c a r e t h a t would o t h e r w i s e be r e q u i r e d by t h e s e p a t i e n t s . In the B.C. s i t u a t i o n , many o f the p a t i e n t s would r e q u i r e p a r e n t e r a l n u t r i t i o n i n h o s p i t a l i f not on the HPN program. Rough c a l c u l a t i o n o f c o s t s a v i n g f o r t h i s group, assuming t h a t c o s t s o f s o l u t i o n s , equipment and t r a i n i n g would be the same, i s thus a f u n c t i o n o f the d a i l y h o s p i t a l r a t e o f a p p r o x i m a t e l y $350 per day o r $127,750 per p a t i e n t / y e a r . T h i s - 119 -enormous s a v i n g ( o v e r 400% o f the average HPN y e a r l y c o s t ) i s l i k e l y more r e a l i s t i c f o r t h o s e p a t i e n t s whose m e d i c a l s i t u a t i o n p r e c l u d e s o r a l a l i m e n t a t i o n and r e q u i r e s p a r e n t e r a l n u t r i t i o n 6 t o 7 days per week. The i s s u e o f quality of l i f e a t t a i n e d by HPN p a t i e n t s i s one o f c o n c e r n t o both p a t i e n t s and p r o f e s s i o n a l s . I t has not, however, s p e c i f i c a l l y been a d d r e s s e d by t h i s t h e s i s because o f i n a d e q u a t e a v a i l a b l e d a t a and the d i f f i c u l t y i n a c t u a l l y measuring q u a l i t y o f l i f e . C l e a r l y , many p a t i e n t s ' l i v e s depend on the a v a i l a b i l i t y o f p a r e n t e r a l n u t r i t i o n t h e r a p y and are p r o l o n g e d because o f i t . F u r t h e r , b e i n g a b l e t o manage the t h e r a p y a t home enhances the q u a l i t y o f l i f e f o r many o f t h e s e p a t i e n t s . The a n e c d o t a l i n f o r m a t i o n p r o v i d e d by the m a j o r i t y o f p a t i e n t s s u r v e y e d s u p p o r t s the w i d e l y h e l d view t h a t the q u a l i t y o f l i f e on HPN can be h i g h . Many o f t h e p a t i e n t s i n the t h e s i s group were a b l e t o c o n t i n u e w i t h work, f a m i l y and s o c i a l a c t i v i t i e s . N e v e r t h e l e s s , a few p a t i e n t s d i d not do w e l l . I t i s a s h o r t c o m i n g o f t h i s study t h a t i t d i d not p r o v i d e s u f f i c i e n t d a t a t o d e t e r m i n e why many p a t i e n t s who began on HPN are no l o n g e r on the t h e r a p y . Thus, i t i s not p o s s i b l e t o a s s e s s HPN's o v e r a l l e f f e c t on q u a l i t y o f l i f e f o r B.C.'s p a t i e n t s . In f u t u r e , i t would be v a l u a b l e i f such i n f o r m a -t i o n on p a t i e n t outcome was c o l l e c t e d . In t h i s way, p r o f e s s i o n a l s r e s p o n s i b l e f o r s e l e c t i n g and managing HPN p a t i e n t s would g a i n a b e t t e r u n d e r s t a n d i n g o f what d i a g n o s t i c c h a r a c t e r i s t i c s and p a t i e n t a t t r i b u t e s c o n t r i b u t e t o the o v e r a l l s u c c e s s o f the program. F. O r g a n i z a t i o n The r e s u l t s o f both the p r o f e s s i o n a l and p a t i e n t q u e s t i o n n a i r e s showed t h a t organizational problems e x i s t w i t h the HPN program i n B.C. The r o o t o f - 120 -t h e s e problems seems t o l i e i n the program's d i s j o i n t e d n a t u r e . The M i n i s t r y o f H e a l t h i s r e s p o n s i b l e f o r p r o v i s i o n and d e l i v e r y o f s o l u t i o n s and s u p p l i e s , and has d e l e g a t e d two groups, KDS and T r a v a c a r e , t o perform t h e s e f u n c t i o n s . T r a i n -i n g and c l i n i c a l f o l l o w - u p are c e n t e r e d i n the h o s p i t a l s and p h y s i c i a n s ' o f f i c e s and are v a r i a b l e , as a l s o are p a t i e n t e x p e c t a t i o n s . C l i n i c a l and a d m i n i s t r a t i v e a s p e c t s o f the HPN system a r e s e p a r a t e d and no one p e r s o n appears t o have c o n t r o l of the t o t a l s i t u a t i o n . The r e s u l t i s a s i t u a t i o n t h a t i s complex, and an environment where communication and consensus are made d i f f i c u l t . The h e a l t h p r o f e s s i o n a l s s u r v e y e d a l m o s t unanimously c i t e d b u r e a u c r a t i c and a d m i n i s t r a t i v e d i f f i c u l t i e s ( T a b l e 5-32), as w e l l as the need t o s t a n d a r d i z e the program. P a t i e n t s a l s o o u t l i n e d problems due t o the o r g a n i z a t i o n a l p r o c e s s . F o r example, one person d e s c r i b e d how a change i n HPN p r e s c r i p t i o n took 3 weeks to a r r i v e from T r a v a c a r e i n C a l g a r y , a n o t h e r d e s c r i b e d the problems i n d e a l i n g w i t h the v a r i o u s departments o f KDS, and s e v e r a l more i n d i c a t e d the l a c k o f communi-c a t i o n s e x i s t i n g between KDS, the warehouse r e s p o n s i b l e f o r d e l i v e r y o f s u p p l i e s and the p r o f e s s i o n a l s c a r i n g f o r the p a t i e n t . T h i s l a c k o f communication became more o b v i o u s when s p e a k i n g t o the h o s p i t a l n u r s e s , who i n d i c a t e d they were g i v e n no n o t i f i c a t i o n o f changes t o p a t i e n t s ' HPN p r e s c r i p t i o n s . R a t h e r , o n l y i f a p a t i e n t was r e a d m i t t e d t o h o s p i t a l was the nurse updated on the HPN s t a t u s . At t i m e s , t h i s s i t u a t i o n r e s u l t e d i n problems, f o r example, when a p a t i e n t c o n t a c t e d the nurse who was not c o m p l e t e l y i n f o r m e d o f the p a t i e n t ' s s i t u a t i o n . S i m i l a r l y , a T r a v a c a r e - 121 -r e p r e s e n t a t i v e s t a t e d t h a t t h e r e were d i f f i c u l t i e s i n communicating because the company had c o n t a c t o n l y w i t h KDS and not the p a t i e n t . I t i s a l s o i n t e r e s t i n g t o f o c u s here on some o f the o r g a n i z a t i o n a l r e s u l t s d e s c r i b e d i n t h e l i t e r a t u r e . One American a u t h o r d e s c r i b e s the move i n the U.S. t o a l l o c a t e HPN p a t i e n t s t o o u t s i d e vendors ( B a p t i s t a , 1984). I t i s B a p t i s t a ' s view t h a t such a l l o c a t i o n o f p a t i e n t s t o o u t s i d e a g e n c i e s f o r c a r e may remove the mechanism f o r p e r i o d i c r e a s s e s s m e n t by e x p e r i e n c e d n u t r i t i o n a l s u p p o r t teams i n the h o s p i t a l . T h i s c r e a t e s a p o t e n t i a l s i t u a t i o n f o r the vendor o f s o l u t i o n s to make, o r f a i l t o make, medical d e c i s i o n s r e g a r d i n g the p a t i e n t s ' HPN t h e r a p y . C l e a r l y , the a u t h o r b e l i e v e s t h i s i s not i n the p a t i e n t s ' b e s t i n t e r e s t . Wesley e x p r e s s e d the view t h a t the b e s t o r g a n i z a t i o n would a l l o w a commercial company t o o n l y s u p p l y s o l u t i o n s and equipment, w h i l e e x p e r i e n c e d h o s p i t a l c l i n i c a l p e r s o n n e l would p r o v i d e f o l l o w - u p c a r e (Wesley, 1984). G i v e n t h i s , an attempt w i l l be made t o s u g g e s t some organizational changes t h a t may h e l p t o a d d r e s s the problems d i s c u s s e d above. These s u g g e s t i o n s f o l l o w . I t i s recommended t h a t : 1. The B.C. government s h o u l d c l e a r l y r e c o g n i z e the HPN program as a d i s t i n c t and n e c e s s a r y s e r v i c e p r o v i d e d t o B.C. p a t i e n t s . 2. The M i n i s t r y o f H e a l t h s h o u l d c e n t r a l i z e the p r e p a r a t i o n and d e l i v e r y o f s o l u t i o n s , s u p p l i e s and equipment. Then p a t i e n t s would deal w i t h a s i n g l e o r g a n i z a t i o n and communication problems would be m i n i m i z e d . At p r e s e n t , the M i n i s t r y i s c o n s i d e r i n g the p o s s i b i l i t y o f a l l o c a t i n g t h i s f u n c t i o n t o T r a v a c a r e . However, b e f o r e i t does, a s s u r a n c e s h o u l d be p r o v i d e d t h a t the company can meet the needs o f p a t i e n t s ( b o t h a d u l t s and c h i l d r e n ) . - 122 -3. The p h y s i c i a n s c a r i n g f o r the p a t i e n t s s h o u l d be i n d i r e c t c o n t a c t w i t h the o r g a n i z a t i o n s u p p l y i n g p a t i e n t s ' s o l u t i o n s and s u p p l i e s , and the h o s p i t a l p r o f e s s i o n a l s ( n u r s e s and p h a r m a c i s t s ) who f o l l o w - u p o u t p a t i e n t s i n person or v i a the t e l e p h o n e . A l l c o n c e r n e d p r o f e s s i o n a l s s h o u l d be kept i n f o r m e d o f HPN s o l u t i o n p r e s c r i p t i o n changes. A m u l t i - c o p y p r e s c r i p t i o n a c q u i s i t i o n form would perhaps a i d i n t h i s r e s p e c t . F i n a l l y , t h e r e s h o u l d be a mechanism t o ensure ongoing r e a s s e s s m e n t o f the p a t i e n t ' s c o n d i t i o n (medical and p s y c h o l o g i c a l ) and the c o n t i n u i n g need f o r HPN. 4. One per s o n a s s o c i a t e d w i t h the M i n i s t r y o f H e a l t h s h o u l d be a p p o i n t e d t o a c t as c o - o r d i n a t o r o f the o r g a n i z a t i o n a l a s p e c t s o f the program and be a v a i l a b l e t o p r o f e s s i o n a l s and p a t i e n t s i n times o f d i f f i c u l t i e s . The M i n i s t r y o f H e a l t h c u r r e n t l y r e c o g n i z e s many o f t h e s e problems and i s i n t he p r o c e s s o f making o r g a n i z a t i o n a l changes. G. P s y c h o s o c i a l I s s u e s B.C. p a t i e n t s appear t o have many p s y c h o s o c i a l problems. T a b l e 5-8 shows t h a t p a t i e n t s ' r a t i n g o f HPN's i n t e r f e r e n c e s w i t h a c t i v i t i e s i s much h i g h e r than t h a t r e p o r t e d by the S e a t t l e group. The r e a s o n s f o r t h e s e problems, a re o f co u r s e v a r i e d , b ut o f t e n p o i n t t o a l a c k o f emotional s u p p o r t o r e d u c a t i o n . D i s c u s s i o n o f a number o f t h e s e a r e a s f o l l o w s . Lack of support by friends or family was a c o m p l a i n t o f a number o f p a t i e n t s . E i g h t o f the p a t i e n t s s u r v e y e d r e p o r t e d t h a t t h e i r f r i e n d s had d i f f i c u l t y a c c e p t i n g t he s i t u a t i o n and 3 p e o p l e s t a t e d t h a t t h e i r f a m i l y had such d i f f i c u l t y , a t l e a s t i n i t i a l l y . - 123 -The l i t e r a t u r e makes i t c l e a r t h a t a s u c c e s s f u l outcome f o r HPN p a t i e n t s depends upon f a m i l y u n d e r s t a n d i n g and s u p p o r t . Both G u l l e d g e and J o h n s t o n s t r e s s the need f o r h e a l t h p r o f e s s i o n a l s t o work w i t h the f a m i l y i n making a s a t i s f a c t o r y a d j u s t m e n t t o HPN ( G u l l e d g e , 1980; J o h n s t o n , 1981). In B.C., t h i s does not always happen. F o r many p a t i e n t s , the adjustment t o HPN i s made s a t i s f a c t o r i l y w i t h o u t p r o f e s s i o n a l a s s i s t a n c e , but f o r a few, the unmet need i s r e a d i l y a p p a r e n t . An extreme example o f t h i s i s shown by one respondent who s t a t e d t h a t he was t e r r i f i e d o f i n f e c t i o n o r s i d e e f f e c t s o f HPN t h e r a p y the e n t i r e time he was on the program. H i s f a m i l y was u n w i l l i n g t o l e a r n HPN pro c e d u r e s o r h e l p i n any way, and a s i b l i n g c o u l d not even watch the s o l u t i o n s r u n n i n g i n . T h i s p a t i e n t never a d j u s t e d , and the HPN e x p e r i e n c e f o r him was a p a i n f u l one from b e g i n n i n g t o end. F o r whatever r e a s o n , p r o f e s s i o n a l h e l p was not a v a i l a b l e t o t h i s p a t i e n t . Two o t h e r p a t i e n t s d e s c r i b e d e a t i n g f o o d o r a l l y because o f the d e s i r e t o f i t i n s o c i a l l y , even though they knew p a i n would r e s u l t . I t i s i n t e r e s t i n g t h a t the p r o f e s s i o n a l s s u r v e y e d c l e a r l y i n d i c a t e d t h e i r p e r c e p t i o n o f a l a c k o f adequate p a t i e n t f o l l o w - u p and p s y c h o s o c i a l suppor t . In g e n e r a l , they f e l t more o u t p a t i e n t home v i s i t s and c l i n i c f o l l o w - u p by p r o f e s s i o n a l s s h o u l d o c c u r and t h a t p r o f e s s i o n a l s such as s o c i a l workers c o u l d p r o v i d e b e n e f i t t o some p a t i e n t s . P a t i e n t s , on the o t h e r hand, a l t h o u g h r e l a t i n g v a r i o u s problems they had had w h i l e on HPN, d i d n o t , e x c e p t i n a few c a s e s , mention the need f o r more p r o f e s s i o n a l h e l p . T h i s may be due t o a problem w i t h the p a t i e n t q u e s t i o n n a i r e , which d i d not d i r e c t l y ask the q u e s t i o n ; d i d p a t i e n t s t h i n k more p r o f e s s i o n a l h e l p and c o n t a c t was n e c e s s a r y ? T h i s i s an i n t e r e s t i n g q u e s t i o n f o r f u t u r e c o n s i d e r a t i o n . - 124 -The importance of meeting others on HPN was d e s c r i b e d by s e v e r a l p a t i e n t s , and t h i s view i s s u p p o r t e d by the l i t e r a t u r e . However, i n B.C., l i t t l e a s s i s t a n c e i s g i v e n t o p a t i e n t s i n t h i s r e g a r d . Of the p a t i e n t s spoken t o , none knew o f t h e Oley F o u n d a t i o n o r i t s " L i f e l i n e L e t t e r " p u b l i s h e d f o r HPN p a t i e n t s and d e s i g n e d f o r s e l f - h e l p and s h a r i n g o f p r a c t i c a l i n f o r m a t i o n . The p a t i e n t s u r v e y showed t h a t f o r the m a j o r i t y o f p a t i e n t s , HPN produced a p o s i t i v e e f f e c t on overall l i f e ( T a b l e 5-11). However, f o r a small number (4 p a t i e n t s ) , t h e e f f e c t was n e g a t i v e . C h a r t r e s u l t s a l s o c o n f i r m t h a t a small group does not do w e l l , and needs h e l p t h a t i s c u r r e n t l y not b e i n g p r o v i d e d . F o r example, one p a t i e n t d e v e l o p e d c a t h e t e r s e p s i s as a r e s u l t o f s i t t i n g i n a hot t u b , even though the outcome was p r e d i c t a b l e . A n o t h e r p a t i e n t used the c e n t r a l l i n e f o r a d m i n i s t r a t i o n o f n a r c o t i c s . To c o n c l u d e , t h e r e s u l t s o f t h i s t h e s i s i n d i c a t e t h a t t h e r e i s a need f o r a more holistic approach t o o u t p a t i e n t c a r e o f HPN p a t i e n t s . C e r t a i n l y , most p a t i e n t s do w e l l c l i n i c a l l y , but emotional and p s y c h o s o c i a l s u p p o r t i s l a c k i n g . I t was the g e n e r a l view o f p r o f e s s i o n a l s t h a t p a t i e n t s would b e n e f i t from a t l e a s t one home v i s i t by a nurse o r s o c i a l worker i n the e a r l y p o s t - d i s c h a r g e p e r i o d t o g i v e h e l p where r e q u i r e d , and t o a s s e s s t h e need f o r f u r t h e r h e l p . F o l l o w - u p a s s i s t a n c e from h e a l t h p r o f e s s i o n a l s o t h e r than t h e p h y s i c i a n may a l s o be v e r y v a l u a b l e t o p a t i e n t s who have d i f f i c u l t y a d a p t i n g t o the changes i n l i f e s t y l e r e q u i r e d because o f HPN t h e r a p y . Any i n c r e a s e i n s e r v i c e t o HPN p a t i e n t s w i l l c o s t more money. Yet, g i v e n the i n v e s t m e n t a l r e a d y made t o e s t a b l i s h t h e s e p e o p l e on HPN t h e r a p y , i t would seem a wise i n v e s t m e n t , h e l p i n g toward o p t i m a l outcome f o r each p a t i e n t and p r e v e n t i n g u n n e c e s s a r y h o s p i t a l i z a t i o n o r o t h e r forms o f med i c a l c a r e . Indeed, - 125 -because o f improved outcomes, c o s t s a v i n g may even r e s u l t t o compensate f o r the e x t r a c o s t s . Recommendations As a r e s u l t o f the i n f o r m a t i o n g a t h e r e d from t h i s t h e s i s , some recommenda-t i o n s f o r the improvement o f the HPN program i n B.C. can be made f u r t h e r t o the s p e c i f i c o r g a n i z a t i o n a l recommendations on p.121. Some o f the recommendations i n v o l v e i n c r e a s e d f i n a n c i a l c o s t and thus the program a d m i n i s t r a t o r s w i l l need to d e c i d e i f the b e n e f i t s j u s t i f y t h e c o s t s . I t i s recommended t h a t the B.C. HPN program be m o d i f i e d so a s : 1. To s t a n d a r d i z e t he s e r v i c e g i v e n t o each HPN p a t i e n t and to p r o v i d e each p a t i e n t w i t h a t l e a s t pre-mixed c o r e s o l u t i o n s . 2. To ensure adequate and e a s i e r communication among p a t i e n t s , h e a l t h p r o f e s s i o n a l s , and M i n i s t r y o f H e a l t h o r commercial company, i f a p p l i c a b l e . 3. To ensure p a t i e n t s a re f o l l o w e d - u p as o u t p a t i e n t s by a t l e a s t one member o f the h o s p i t a l h e a l t h p r o f e s s i o n a l team c a r i n g f o r the p a t i e n t , a s i d e from t he p h y s i c i a n . 4. To ensure a t l e a s t one home v i s i t by a h e a l t h p r o f e s s i o n a l i s p r o v i d e d a f t e r h o s p i t a l d i s c h a r g e . 5. To p r o v i d e a c c e s s t o p r o f e s s i o n a l p s y c h o s o c i a l s u p p o r t i n c a s e s o f need. 6. 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A r o u t e t o home. N u r s i n g M i r r o r V o l . 161, No. 4: 23-28. J e e j e e b h o y , K.N. e t a l . 1976. T o t a l p a r e n t e r a l n u t r i t i o n a t home: S t u d i e s i n p a t i e n t s s u r v i v i n g 4 months t o 5 y e a r s . G a s t r o e n t e r o l o g y V o l . 71, No. 6: 943-953. ' J e e j e e b h o y , K.N. and Langer, B. 1980. Home p a r e n t e r a l n u t r i t i o n . CMAJ 122, J a n : 143-144. J e e j e e b h o y , K.M. ( e d i t o r ) 1983. T o t a l P a r e n t e r a l N u t r i t i o n i n the H o s p i t a l and a t Home. Boca Raton, F l o r i d a : CRC P r e s s I n c . J o h n s t o n , Jane 1981. Home p a r e n t e r a l n u t r i t i o n : The " c o s t s " o f p a t i e n t and f a m i l y p a r t i c i p a t i o n . S o c i a l Work i n H e a l t h Care V o l . 7, No. 2, Wi n t e r : 49-66. - 129 -K e i g h l e y , B.D. and MacGregor, A.R. 1980. T o t a l p a r e n t e r a l n u t r i t i o n a t home: The i m p l i c a t i o n s f o r a r u r a l p r a c t i c e . J o u r n a l o f the Royal C o l l e g e o f General P r a c t i t i o n e r s 30: 354-357. 1986. Kidney D i a l y s i s S e r v i c e T.P.N. Program. HPN pr o c e d u r e s , U n p u b l i s h e d . March. K o i t h a n , Mary 1985. Home t o t a l p a r e n t e r a l n u t r i t i o n c o m p l i c a t i o n s . NITA V o l . 8, May/June: 231. Ladefog e d , K a r i n and Jarnum, S t i g 1978. Long-term p a r e n t e r a l n u t r i t i o n , Br. Med. J . 2: 262-266. L a d e f o g e d , K a r i n 1981. Q u a l i t y o f l i f e i n p a t i e n t s on permanent home p a r e n t e r a l n u t r i t i o n . JPEN V o l . 5, No. 2: 132-137. Ladef o g e d , K a r i n 1985. M e t a b o l i c c o m p l i c a t i o n s t o t o t a l p a r e n t e r a l n u t r i t i o n . A c t a A n a e s t h e s i o l Scand. 29: 89-94. Le e s , C D . e t a l . 1981. Home p a r e n t e r a l n u t r i t i o n . S u r g i c a l Cl i n i c s o f  North America V o l . 61, No. 3: 621-633. L o u i s , B e v e r l y 1983. Development o f a home p a r e n t e r a l n u t r i t i o n t r a i n i n g manual. H o s p i t a l pharmacy r e s i d e n c y p r o j e c t , Vancouver General H o s p i t a l . U n p u b l i s h e d . M c A l l i s t e r , J.C.; B l a c k , B.L.; G r i f f i n , R.E.; Smith, J . E . 1986. C o n t r o v e r s i a l i s s u e s i n home h e a l t h c a r e : A r o u n d t a b l e d i s c u s s i o n . Am. J . Hosp. Pharm. 43: 933. M a c R i t c h i e , K . J. 1978. L i f e w i t h o u t e a t i n g o r d r i n k i n g . Canadian P s y c h i a t r i c A s s o c i a t i o n J o u r n a l 23: 373-379. - 130 -P e r l , Mark e t a l . 1980. P s y c h o l o g i c a l a s p e c t s o f l o n g - t e r m home h y p e r a l i m e n -t a t i o n . JPEN V o l . 4, No. 6: 554-560. P r i c e , B.S. and L e v i n e , E.L. 1979. Permanent t o t a l p a r e n t e r a l n u t r i t i o n : P s y c h o l o g i c a l and s o c i a l r e s p o n s e s o f the e a r l y s t a g e s . JPEN V o l . 3, No. 2: 48-51. R a l s t o n , C.W. e t a l . 1984. Somatic growth and developmental f u n c t i o n i n g i n c h i l d r e n r e c e i v i n g p r o l o n g e d home t o t a l p a r e n t e r a l n u t r i t i o n . J . Ped. V o l . 105, No. 5: 842-846. Rannen, T. e t a l . 1986. C a t h e t e r - r e l a t e d s e p t i c e m i a i n p a t i e n t s r e c e i v i n g home p a r e n t e r a l n u t r i t i o n . Scand. J . G a s t r o e n t e r o l . V o l . 21, No. 4: 455-460. R i e l l a , M.C. and S c r i b n e r , B.H. 1976. F i v e y e a r s ' e x p e r i e n c e w i t h a r i g h t a t r i a l c a t h e t e r f o r p r o l o n g e d p a r e n t e r a l n u t r i t i o n a t home. S u r g e r y ,  Gynecology and O b s t e t r i c s V o l . 143, Aug.: 205-208. Robb, R.A. e t a l . 1983. S u b j e c t i v e assessment o f p a t i e n t outcomes o f home p a r e n t e r a l n u t r i t i o n . Am. J . Hosp. Pharm. V o l . 40, Oct.: 1646-1650. R o b i n o v i t c h , A r i e n e E. 1981. Home t o t a l p a r e n t e r a l n u t r i t i o n : A p s y c h o - s o c i a l v i e w p o i n t . JPEN V o l . 5, No. 6: 522-525. Rogers, Beth L. 1984. Home p a r e n t e r a l n u t r i t i o n : P r i n c i p l e s and management. Nurse P r a c t i t i o n e r March: 42-52. S c h n e i d e r , P.J. and M i r t a l l o , M.S. 1981. Home p a r e n t e r a l n u t r i t i o n programs. JPEN V o l . 5, No. 2: 157-160. S c r i b n e r , B.H. e t a l . 1970. Long-term t o t a l p a r e n t e r a l n u t r i t i o n . The co n c e p t o f an a r t i f i c i a l g u t . JAMA V o l . 212, No. 3: 457-463. S h i l s , M a u r i c e E. 1975. A program f o r t o t a l p a r e n t e r a l n u t r i t i o n a t home. Am. J . C l i n i c a l N u t r i t i o n 28 D e c : 1429-1435. - 131 -1986. S t . P a u l ' s H o s p i t a l P a r e n t e r a l N u t r i t i o n T e a c h i n g Manual. U n p u b l i s h e d . S t e i g e r , E z r a and S r p , F a i t h 1983. M o r b i d i t y and m o r t a l i t y r e l a t e d t o home p a r e n t e r a l n u t r i t i o n i n p a t i e n t s w i t h gut f a i l u r e . Am. J . Surg . V o l . 145: 102-105. S t e i n , R.E.K. and J e s s o p , D.J. 1984. Does p e d i a t r i c home c a r e make a d i f f e r e n c e f o r c h i l d r e n w i t h c h r o n i c i l l n e s s ? F i n d i n g s from the p e d i a t r i c ambulatory c a r e t r e a t m e n t s t u d y . P e d i a t r i c s V o l . 73, No. 6: 845-853. S t r o b e l , C.T.; Byrne, W.J.; F o n k a l s r u d , E.W.; Ament, M.E. 1978. Home p a r e n t e r a l n u t r i t i o n : R e s u l t s i n 34 p e d i a t r i c p a t i e n t s . Annals o f S u r g e r y V o l . 188, No. 3: 394-402. S t r o b e l , C.T.; Byrne, W.J.; Ament, M.E. 1979. Home p a r e n t e r a l n u t r i t i o n i n c h i l d r e n w i t h Crohn's d i s e a s e : An e f f e c t i v e management a l t e r n a t i v e . G a s t r o e n t e r o l o g y V o l . 77, No. 2: 272-279. 1985. U n i v e r s i t y o f B r i t i s h Columbia H e a l t h S c i e n c e s C e n t r e H o s p i t a l Home TPN Program I n f o r m a t i o n B o o k l e t . U n p u b l i s h e d . 1983. Vancouver General H o s p i t a l TPN N u r s i n g Manual. U n p u b l i s h e d . 1983. Vancouver G e n e r a l H o s p i t a l Pharmacy HPN Manual. U n p u b l i s h e d . Ward, M.W.N.; H a r r i s o n , R.A.; D o y l e , J . ; C l a r k , C.G. 1984. P a r e n t e r a l n u t r i t i o n a t home. The P r a c t i t i o n e r V o l . 228, S e p t . : 831-833. Weiss, Stephen M.; W o r t h i n g t o n , P.H.; P r i o l e a u , M.; Rosato, F.E. 1982. Home t o t a l p a r e n t e r a l n u t r i t i o n i n c a n c e r p a t i e n t s . Cancer V o l . 50, No. 6: 1210-1213. Wesley, J.R. e t a l . 1984. Home p a r e n t e r a l n u t r i t i o n : A h o s p i t a l - b a s e d program w i t h commercial l o g i s t i c s u p p o r t . JPEN V o l . 8, No. 5: 585-588. - 132 -Wolfe, B.M. e t a l . 1983. E x p e r i e n c e w i t h home p a r e n t e r a l n u t r i t i o n . Am. J . S u r g . V o l . 146, J u l y : 7-14. Z l o t k i n , S.H.; S t a l l i n g s , V.A.; P e n c h a r z , M.B. 1985. T o t a l p a r e n t e r a l n u t r i t i o n i n c h i l d r e n . P e d i a t r i c C l i n i c s o f North America V o l . 32, No. 2: 381-400. - 133 -APPENDIX I -134 -HOME PARENTERAL NUTRITION (HPN) PATIENT SURVEY JULY 1986 In t h e q u e s t i o n s t h a t f o l l o w p l e a s e e i t h e r p l a c e a check mark a f t e r t h e a p p r o p r i a t e answer, o r f i l l i n t h e i n d i c a t e d i n f o r m a t i o n . PART I: BACKGROUND INFORMATION 1. Age H e i g h t Weight Sex 2. M a r i t a l S t a t u s : S i n g l e M a r r i e d o r common law D i v o r c e d Widowed 3 . Do you: L i v e a l o n e i n a house o r apartment Share a house o r apartment w i t h someone e l s e L i v e i n a n u r s i n g o r c o n v a l e s c e n t home Other, p l e a s e d e s c r i b e 4. When d i d you s t a r t on t h e Home P a r e n t e r a l N u t r i t i o n Program? Month Year 5. Where were you t r a i n e d t o s e l f - a d m i n i s t e r HPN? 6. Was a n o t h e r p e r s o n ( e g . f a m i l y member) t r a i n e d i n HPN t o be a backup pe r s o n f o r you? Yes • No -135-S i n c e s t a r t i n g on t h e HPN p r o g r a m , h a v e y o u e v e r b e e n o f f HPN f o r g r e a t e r t h a n 1 m onth ? No Yes I f y e s , p l e a s e l i s t t h e d a t e s , as b e s t as y o u c a n remember them, t h a t y o u w e r e o f f HPN f o r g r e a t e r t h a n 1 m o n t h ? M o n t h , Y e a r Month, Y e a r From To I f y o u a r e now no l o n g e r on HPN p l e a s e i n d i c a t e when y o u s t o p p e d We know t h a t f o r a v a r i e t y o f r e a s o n s p e o p l e a t t i m e s s t o p r e g u l a r l y s c h e d u l e d i n f u s i o n s . In t h e p a s t 2 m o n t h s o f HPN how o f t e n d i d y o u s k i p one o f y o u r r e g u l a r l y s c h e d u l e d i n f u s i o n s ? N e v e r 1-2 t i m e s a month Once a week More t h a n o n c e a week I f y o u s k i p s c h e d u l e d i n f u s i o n s , p l e a s e l i s t t h e m o s t common r e a s o n f o r s k i p p i n g : ( e x a m p l e s : t o o much b o t h e r , d o n ' t f e e l w e l l , t o o t i r e d , no t i m e , e t c . ) What t y p e o f c a t h e t e r do y o u h a v e ? Hickman B r o v i a c Unknown O t h e r G r a f t -136-10. Do you r o u t i n e l y g e t b l o o d drawn, w h i l e on HPN? No Yes I f y e s , how o f t e n 11. On how many days a week do you i n f u s e ? 12. How long does i t t a k e you t o i n f u s e y o u r s o l u t i o n s ? 13. How much o f y o u r t i m e i s t a k e n p e r i n f u s i o n t o p r e p a r e s o l u t i o n s and c a r e f o r y o u r c a t h e t e r ? (Do not i n c l u d e i n f u s i o n t i m e . ) 14. What t y p e o f s o l u t i o n s do you r e c e i v e ? Pre-mixed s o l u t i o n s ( C o r e ) S o l u t i o n s n o t pre-mixed T o t a l l y mixed s o l u t i o n s (minus u n s t a b l e i n g r e d i e n t s ) 15. Have you had any problems o b t a i n i n g s o l u t i o n s o r s u p p l i e s ? No Yes If y e s , p l e a s e d e s c r i b e t h e problems 16. How much e d u c a t i o n d i d you c o m p l e t e ? E l e m e n t a r y s c h o o l High s c h o o l P o s t h i g h s c h o o l t r a i n i n g o r some u n i v e r s i t y U n i v e r s i t y d e g r ee 17. P l e a s e i n d i c a t e a l l s o u r c e s o f y o u r f a m i l y ' s income: Earned P e n s i o n W e l f a r e Unemployment i n s u r a n c e Other -137-18. What was y o u r p r i m a r y o c c u p a t i o n t h e y e a r b e f o r e you s t a r t e d on HPN? (examples: e l e c t r i c i a n , t e a c h e r , s t u d e n t , homemaker, r e t i r e d , d i s a b l e - d e t c . ) F u l l t i m e P a r t - t i m e (check o n l y one) 19a. What i s you p r e s e n t p r i m a r y o c c u p a t i o n ? F u l l - t i m e P a r t - t i m e (check o n l y one) 19b. If you have had a change i n y o u r o c c u p a t i o n s i n c e s t a r t i n g on HPN, was i t because o f HPN? No Yes P l e a s e e x p l a i n 20. A re you c u r r e n t l y employed? Yes No If no, f o r what r e a s o n a r e you p r e s e n t l y not employed? (Check a l l t h a t a p p l y . ) R e t i r e d P h y s i c a l l y u n a b l e t o work The t i m e r e q u i r e d f o r HPN i n t e r f e r e s w i t h work Other -138-PART I I : MEDICAL 1. How many c a t h e t e r s h a v e y o u had s i n c e s t a r t i n g on t h e HPN p r o g r a m ? • ( i n c l u d i n g y o u r c u r r e n t c a t h e t e r , i f s t i l l on HPN) F o r e a c h c a t h e t e r t h a t y o u h a v e h a d , p l e a s e l i s t i n t h e t a b l e b e l o w ; as -b e s t y o u c a n remember: t h e number o f m o n t h s t h e c a t h e t e r was i n p l a c e , i n c l u d i n g y o u r c u r r e n t c a t h e t e r and t h e r e a s o n f o r r e m o v a l , i f e v e r r e m o v e d . Number o f months R e a s o n f o r r e m o v a l ( m o s t C a t h e t e r # 1 r e c e n t )  C a t h e t e r # 2 C a t h e t e r # 3 C a t h e t e r # 4 C a t h e t e r # 5 C a t h e t e r # 6 C a t h e t e r # 7 C a t h e t e r # 8 C a t h e t e r # 9 C a t h e t e r # 10 C a t h e t e r # 11 2. In t h e l a s t YZ m o n t h s o f HPN, how many t i m e s w e r e y o u a d m i t t e d t o a h o s p i t a l f o r any r e a s o n ? -139-For each a d m i s s i o n d u r i n g t h i s t i m e , p l e a s e complete t h e t a b l e below, as b e s t you can remember: Number o f A d m i s s i o n Reason f o r A d m i s s i o n Days o f H o s p i t a l i z a t i o n # 1 (most r e c e n t ) # 2 # 3 . # 4 # 5 3. In t h e l a s t j_2 months of HPN, how many t i m e s d i d y o u r c a t h e t e r become c l o g g e d o r c l o t t e d t o t h e e x t e n t t h a t you were u n a b l e t o i n f u s e ? 4. In t h e l a s t YZ months o f HPN, how many t i m e s d i d t h e SKIN around o r o v e r y o u r c a t h e t e r become i n f e c t e d ? ( P l e a s e c o u n t o n l y t h o s e i n f e c t i o n s which were v e r i f i e d by y o u r p h y s i c i a n . ) 5. In t h e l a s t j_2 months o f HPN, how many t i m e s d i d you have an i n f e c t i o n i n y o u r b l o o d s t r e a m ( s e p s i s ) which may have been caused by y o u r c a t h e t e r ? We would now l i k e t o ask you some q u e s t i o n s about y o u r g e n e r a l p h y s i c a l h e a l t h . -140-6. P l e a s e i n d i c a t e t h e f r e q u e n c y o f t h e f o l l o w i n g c o n d i t i o n s , i f any, which you have e x p e r i e n c e d s i n c e b e i n g on HPN? Never I n f r e q u e n t F r e q u e n t a) cramping i n hands and f e e t b) l o s s o f h a i r .  c) bone o r j o i n t p a i n d) d r y , s c a l y s k i n e) s k i n r a s h e s f ) a n k l e o r f e e t s w e l l i n g g) s h o r t n e s s o f b r e a t h w h i l e i n f u s i n g h) g e n e r a l i z e d weakness i ) e p i s o d e s o f n e r v o u s n e s s , j i t t e r i n e s s & s w e a t i n g j ) f r e q u e n t u r i n a t i o n w h i l e i n f u s i n g which i n t e r f e r e s w i t h s l e e p K) e p i s o d e s o f d i z z i n e s s when s t a n d i n g up, o c c u r r i n g more t h a n t w i c e a week 7. ' P l e a s e i n d i c a t e t h e f r e q u e n c y o f t h e f o l l o w i n g c o n d i t i o n s , i f any, which you have e x p e r i e n c e d BEFORE YOU STARTED on HPN? a) cramping i n hands and f e e t b) l o s s o f h a i r c) bone o r j o i n t p a i n d) d r y , s c a l y s k i n e) s k i n r a s h e s f ) a n k l e o r f e e t s w e l l i n g Never I n f r e q u e n t F r e q u e n t -141-Never Infrequent Frequent g) generalized weakness h) episodes of nervousness j i t ter iness & sweating ^ i ) episodes of dizziness when standing up occurring more than twice a week 8. Please indicate the reason for your being on HPN. (Examples: Crohn's disease) f i s t u l a , radiation enter i t is) 9. Do you infuse Intral ipid ? No Yes If yes, please check how often you have any of the following symptoms during or shortly after the infusion of Intral ipid ' Frequently (at least with every Never Infrequently other infusion) a) diarrhea b) nausea c) shortness of breath d) feeling of pounding in your chest e) unusual taste in mouth f) increased abdominal cramping g) Others (please l i s t ) -142-10. How has HPN a f f e c t e d y o u r a p p e t i t e ? No c h a n g e I n c r e a s e d D e c r e a s e d No a p p e t i t e 11. P l e a s e l i s t a l l m e d i c a t i o n s ( b o t h p r e s c r i p t i o n and t h o s e y o u buy a t t h e d r u g s t o r e w i t h o u t p r e s c r i p t i o n ) t h a t y o u a r e c u r r e n t l y t a k i n g . Do n o t i n c l u d e y o u r HPN s o l u t i o n . PART I I I : SOCIAL 1. Many t i m e s we a r e t o l d t h a t HPN i n t e r f e r e s w i t h p e o p l e s ' l i v e s . Compared t o when y o u w e r e n o t on HPN, what p r o b l e m s h a v e y o u e x p e r i e n c e d s i n c e b e i n g on HPN? P l e a s e i n d i c a t e b o t h t h e d e g r e e o f s e v e r i t y o f t h e p r o b l e m and t h e way i t i n t e r f e r s w i t h y o u r l i f e . I n t e r f e r e n c e w i t h : a . S l e e p None M o d e r a t e S e v e r e In what way b . T r a v e l None In what way M o d e r a t e S e v e r e -143-c. Sex l i f e None Moderate Severe_ In what way d. Exercise None Moderate Severe_ In what way e. Leisure time act iv i t ies or community ac t iv i t ies None Moderate Severe In what way f. Marital relations None Moderate Severe In what way Family l i f e and social l i f e None Moderate Severe_ In what way h. Religious ac t iv i t ies None Moderate_ In what way Severe -144-i. Work None Moderate Severe In what way j . O t h er, p l e a s e e x p l a i n 2. I t would be h e l p f u l t o us and t o o t h e r s on HPN, t o know how p e o p l e manage t o cope w i t h t h e s e p r o b l e m s . P l e a s e d e s c r i b e what you have done t o cope w i t h them. 3. Are you a b l e t o e a t meals? Yes I f y e s , how many t i m e s a day? : No I f no, do you p r e p a r e meals f o r members o f y o u r h o u s e h o l d who do e a t ? Yes No If no, d i d you b e f o r e s t a r t i n g on HPN? Yes No Not a p p l i c a b l e -145-I f you answered No t o q u e s t i o n 3, why do you not e a t ? (Check a l l t h a t a p p l y . ) T o l d not t o e a t Fear o f nausea No a p p e t i t e Fear o f v o m i t i n g F e a r of d i a r r h e a No need t o e a t Oth e r ( p l e a s e e x p l a i n ) I f you answered No t o q u e s t i o n 3, a r e you r o u t i n e l y p r e s e n t when o t h e r members o f y o u r h o u s e h o l d o r f r i e n d s e a t t h e i r m e a l s ? Yes No If no, were you r o u t i n e l y p r e s e n t when o t h e r s a t e b e f o r e you s t a r t e d HPN? Yes No Does y o u r f a m i l y have d i f f i c u l t y a c c e p t i n g HPN? Yes, but o n l y i n i t i a l l y ; Yes, c o n t i n u a l l y No P l e a s e e x p l a i n Does y o u r f a m i l y h e l p you w i t h y o u r HPN? ( C h e c k - a l l t h a t a p p l y . ) No Yes, g i v e s e m o t i o n a l s u p p o r t Yes, h e l p s w i t h p r e p a r a t i o n o f s o l u t i o n s o r a d m i n i s t r a t i o n -146-8. We know t h a t when one member o f t h e f a m i l y i s r e c e i v i n g HPN o t h e r f a m i l y members' l i v e s a r e sometimes a f f e c t e d . Has y o u r HPN caused changes i n t h e l i v e s o f o t h e r members o f y o u r f a m i l y ? No Yes P l e a s e e x p l a i n 9. Do some o f y o u r f r i e n d s have d i f f i c u l t y a c c e p t i n g y o u r HPN? Yes, but o n l y i n i t i a l l y Yes, c o n t i n u a l l y No P l e a s e e x p l a i n 10. Have you met o t h e r HPN p a t i e n t s ? No Yes I f y e s , do you c o n t i n u e t o be i n c o n t a c t w i t h them? Yes No Is t h e r e l a t i o n s h i p i m p o r t a n t t o you? Yes No If y e s , p l e a s e e x p l a i n -147-11. Do you see any h e a l t h p r o f e s s i o n a l on a r e g u l a r b a s i s r e g a r d i n g HPN? No: Yes If y e s , check as many as a p p r o p r i a t e and i n d i c a t e how o f t e n . S p e c i a l i s t d o c t o r How o f t e n ' G.P. How o f t e n Nurse How o f t e n P h a r m a c i s t How o f t e n o t h e r How o f t e n 12. When you have problems w i t h HPN o r q u e s t i o n s which r e q u i r e immediate a t t e n t i o n whom do you u s u a l l y c o n t a c t ? S p e c i a l i s t d o c t o r G.P. Nurse P h a r m a c i s t Other 13. Have you i n c u r r e d any f i n a n c i a l c o s t s because o f HPN? ( e g . a l t e r a t i o n t o y o u r home, p u r c h a s e o f a r e f r i g e r a t o r , r e q u i r e d t r a v e l t o see y o u r d o c t o r ) No Yes If y e s , p l e a s e d e s c r i b e t h e r e a s o n f o r t h e c o s t and e s t i m a t e t h e a p p r o x i m a t e c o s t . 14. How has HPN a f f e c t e d t h e way i n which you t h i n k a b o u t . y o u r s e l f ; i n o t h e r words, y o u r body image? (Rate on a s c a l e o f 1 t o 7 where 1 i s v e r y p o s i t i v e , 4 i s no e f f e c t , and 7 i s v e r y n e g a t i v e . ) C i r c l e t h e a p p r o p r i a t e number. 1 2 3 4 5 6 7 Very P o s i t i v e No E f f e c t Very N e g a t i v e P l e a s e e x p l a i n -148-15. How has HPN a f f e c t e d your s e l f c o n f i d e n c e ? (Rate on a s c a l e of 1 t o 7 where 1 i s v e r y p o s i t i v e , 4 i s no e f f e c t and 7 i s very n e g a t i v e . ) C i r c l e t h e a p p r o p r i a t e number. 1 2 3 4 5 6 7 Very P o s i t i v e No E f f e c t Very N e g a t i v e P l e a s e e x p l a i n 16. O v e r a l l , what e f f e c t do you t h i n k HPN has had on your l i f e ? (Rate on a s c a l e of 1 t o 7 where 1 i s v e r y p o s i t i v e , 4 i s no e f f e c t , and 7 i s v e r y n e g a t i v e . ) C i r c l e t h e a p p r o p r i a t e number. 1 2 3 4 5 6 7 Very P o s i t i v e No E f f e c t Very N e g a t i v e P l e a s e e x p l a i n Thank you v e r y much f o r t a k i n g t h e time t o complete t h i s q u e s t i o n n a i r e . I f you have a n y t h i n g f u r t h e r t o add o r you wish t o make comments r e g a r d i n g t h e q u e s t i o n p l e a s e f e e l f r e e t o do so. - 149 -APPENDIX II -150-HOME PARENTERAL NUTRITION - HEALTH PROFESSIONAL SURVEY JULY 1986 This survey is divided into six parts. At the end of each part there is a section allowing each participant to rate their expertise in that area. Please complete a l l the questions. Due to the complexity of the subject a number of questions ca l l for additional comments. Please make comments wherever you feel i t necessary. Background Information: (Please check, the appropriate profession.) 1. Are you a Doctor Pharmacist Nurse Social Worker Administrator -151-PART I: MEDICAL CRITERIA FOR SUITABLE CANDIDATES FOR HOME PARENTERAL NUTRITION (HPN) 1. What do you f e e l a r e t h e minimum o r maximum ages f o r c o n s i d e r i n g p a t i e n t s f o r HPN? Minimum Maximum 2. Which o f t h e f o l l o w i n g d i s e a s e s o r m e d i c a l c o n d i t i o n s i s a p p r o p r i a t e f o r HPN t h e r a p y ? Yes No a) T o t a l j e j u n o - i l e a l r e s e c t i o n . b) M a s s i v e s m a l l bowel r e s e c t i o n c ) C h r o n i c s m a l l bowel o b s t r u c t i o n not amenable t o s u r g i c a l a l l e v i a t i o n d) End j e j u n o s t o m y syndrome e) Bowel r e s t f ) A d j u n c t t o c a n c e r t h e r a p y g) A d j u n c t t h e r a p y pre'-op h) O t h e r 3. Which o f t h e f o l l o w i n g d i s e a s e s o r m e d i c a l c o n d i t i o n s p r e c l u d e HPN f o r p a t i e n t s who would o t h e r w i s e meet t h e c o n d i t i o n s i n Q u e s t i o n 2 and who do not r e q u i r e h o s p i t a l i z a t i o n ? P l e a s e comment i f n e c e s s a r y . a) P y s c h i a t r i c d i s e a s e Yes No Comment b) P h y s i c a l c o - o r d i n a t i o n d i f f i c u l t i e s Yes No_ Comment -152-c) S e n i l i t y o r memory l o s s Yes No Comment d) Other Yes No_ Comment 4. What do you f e e l i s t h e minimum number o f r e q u i r e d i n f u s i o n s p e r week b e f o r e c o n s i d e r i n g a p a t i e n t f o r HPN? 1 2 3 >3 5. What do you f e e l i s t h e minimum e x p e c t e d d u r a t i o n f o r PN t o make HPN a p o s s i b l e t h e r a p y ? None Less t h a n 3 months 3-6 months 6-12 months o v e r 12 months 6. For P a r t I do you c o n s i d e r y o u r s e l f E x p e r t Knowledgeable Not kn o w l e d g e a b l e PART I I : THE HOME SITUATION FOR HPN PATIENTS 1. Is a c c e p t a n c e of HPN by f a m i l y members o r s i g n i f i c a n t o t h e r s E s s e n t i a l D e s i r a b l e Not N e c e s s a r y -153-2. Is p h y s i c a l a s s i s t a n c e (eg. w i t h c a t h e t e r c a r e , s o l u t i o n p r e p a r a t i o n o r a d m i n i s t r a t i o n ) by f a m i l y members o r s i g n i f i c a n t o t h e r s ( n o t e : i t would be e s s e n t i a l f o r s m a l l c h i l d r e n ) E s s e n t i a l D e s i r a b l e Not N e c e s s a r y 3. C o u l d a p a t i e n t l i v i n g a l o n e be c o n s i d e r e d f o r HPN? Yes No Perhaps 4. Are t h e r e any p h y s i c a l r e q u i r e m e n t s f o r a HPN p a t i e n t ' s home? Comment 5. F o r P a r t II do you c o n s i d e r y o u r s e l f E x p e r t Knowledgeable Not Knowledgeable PART I I I : PATIENT ATTRIBUTES 1. In o r d e r f o r HPN t o be s u c c e s s f u l t h e p a t i e n t ( o r , i n t h e c a s e o f c h i l d r e n , t h e r e s p o n s i b l e a d u l t ) must be: a) Above a v e r a g e i n t e l l e g e n c e At l e a s t a v e r a g e i n t e l l i g e n c e I n t e l l i g e n c e i s not i m p o r t a n t b) H i g h l y m o t i v a t e d M o d e r a t e l y m o t i v a t e d M o t i v a t i o n i s not i m p o r t a n t 2. F o r P a r t I I I do you c o n s i d e r y o u r s e l f E x p e r t Knowledgeable Not Knowledgeable -154-PART IV: HPN SERVICE 1. HPN should be available to patients : Only in the lower mainland and Victoria Only in the lower mainland and Victoria and large centers in the province Anywhere in the province Other (please specify) 2. As a minimum standard, solutions should: Be to ta l ly mixed to patient specifications (minus unstable ingredients) Be provided as core solutions Not be pre-mixed Vary depending on the patient Comment 3. Delivery of solutions and supplies to the patient's home i s : Essential Desirable Not Necessary 4. Solutions and supplies should be provided: Weekly Every 2 weeks Monthly 5. Ideally solutions and supplies should be provided by: A hospital Private company_ Government agency (eg. KDS) Other Comments -155-6. Once d i s c h a r g e d from h o s p i t a l , p a t i e n t s on HPN s h o u l d be seen r e g u l a r l y (assuming no pr o b l e m s ) by: (check as many as a p p r o p r i a t e ) S p e c i a l i s t Yes No How o f t e n G e n e r a l P r a c t i t i o n e r Yes No How o f t e n Nurse Yes No How o f t e n _ P h a r m a c i s t Yes No How o f t e n O t h e r 7. P a t i e n t s s h o u l d i d e a l l y be seen a t : A s p e c i a l i s t ' s o f f i c e A G.P.'s o f f i c e An o u t p a t i e n t c l i n i c o f a h o s p i t a l O t h e r 8. I f a p a t i e n t l i v e s o u t s i d e t h e lower m a i n l a n d o r V i c t o r i a does t h i s make a d i f f e r e n c e t o t h e answer t o q u e s t i o n 6 and 7. P l e a s e comment. 9. Are home v i s i t s , e i t h e r p r e - o r S p e c i a l i s t Yes G.P. Yes Nurse Yes P h a r m a c i s t Yes S o c i a l worker Yes Other - d i s c h a r g e from h o s p i t a l r e q u i r e d by: No When No When No When No When No When -156-10. If P a t i e n t s have emergent q u e s t i o n s about t h e i r t h e r a p y who s h o u l d t h e y f i r s t c o n t a c t ? S p e c i a l i s t G.P. Nurse Pharmacist_ Depends on t h e n a t u r e o f t h e problem 11. For p a r t IV do you c o n s i d e r y o u r s e l f : E x p e r t Knowledgeable Not Knowledgeable PART V: PATIENT SELECTION AND TRAINING 1. Who s h o u l d be i n v o l v e d i n HPN p a t i e n t s e l e c t i o n ? D o c t o r Nurse P h a r m a c i s t D i e t i c i a n S o c i a l Worker Yes_ Yes_ Yes_ Yes_ Yes P s y c h i a t r i s t / P s y c o l o g i s t Yes No_ No_ No_ No_ No_ No Sometimes_ Sometimes Sometimes Sometimes Sometimes_ Sometimes 2. Where s h o u l d HPN t r a i n i n g o f p a t i e n t s o c c u r ? At d e s i g n a t e d t e a c h i n g h o s p i t a l s At l a r g e h o s p i t a l s t h r o u g h o u t t h e p r o v i n c e Any h o s p i t a l i n B.C. O t h e r 3. Who s h o u l d i d e a l l y t r a i n p a t i e n t s t o manage HPN? (Check as many as a p p r o p r i a t e ) D o c t o r Nurse P h a r m a c i s t Other B r i e f l y d e s c r i b e each p e r s o n s ' r o l e -157-4. What s h o u l d t r a i n i n g i n c l u d e ? (Check as many as a p p r o p r i a t e ) A d e s c r i p t i o n o f t h e d i s e a s e B a s i c s of PN t h e r a p y Anatomy as p e r t i n e n t Care o f t h e c a t h e t e r o r g r a f t P r e p a r a t i o n o f s o l u t i o n s A d m i n i s t r a t i o n t e c h n i q u e P o t e n t i a l problems O t h e r 5. What i s t h e e x p e c t e d l e n g t h o f t r a i n i n g t i m e ? L e s s t h a n 1 week 1-2 weeks 2-4 weeks_ >4 weeks 6. What would t h e e x p e c t e d number o f s e s s i o n s w i t h each p e r s o n i n v o l v e d i n t r a i n i n g be? D o c t o r P h a r m a c i s t Nurse Other :  7. T r a i n i n g a second p e r s o n as a (back up p e r s o n f o r t h e HPN p a t i e n t ) i s : E s s e n t i a l D e s i r a b l e Not R e q u i r e d 8. C o n t a c t w i t h o t h e r HPN p a t i e n t s i s : E s s e n t i a l D e s i r a b l e Not R e q u i r e d 9. Is i t e s s e n t i a l t h a t t h e r e be a c o n t i n u i t y of c a r e i n and out of t h e h o s p i t a l ? Comment -158-10. F o r P a r t V do y o u c o n s i d e r y o u r s e l f : E x p e r t K n o w l e d g e a b l e Not K n o w l e d g e a b l e PART V I : THE CURRENT SITUATION IN B.C. E a c h p a r t i c i p a n t i n t h i s q u e s t i o n n a i r e i s c u r r e n t l y i n v o l v e d w i t h HPN i n B.C. The p u r p o s e o f t h i s s e c t i o n i s t o c l a r i f y t h e p o s i t i v e and n e g a t i v e a t t r i b u t e s o f t h e s i t u a t i o n as i t f u n c t i o n s a t t h e p r e s e n t t i m e . P l e a s e a n s w e r a l l t h e q u e s t i o n s and comment where y o u f e e l a p p r o p r i a t e . 1. P a t i e n t s e l e c t i o n i s : Good F a i r P o o r Comment 2. T r a i n i n g i s : Good F a i r P o o r Comment 3. F o l l o w - u p i s : Good F a i r P o o r Comment P a t i e n t p s y c h o / s o c i a l s u p p o r t by p r o f e s s i o n a l s i s : Good F a i r P oor Comment -159-5. The degree to which solutions are pre-mixed for HPN patients is on average Highly acceptable Acceptable Not acceptable Comment 6. Standard of the delivery of solutions and supplies i s : High Acceptable Poor Comment 7. Patient need for HPN in the province i s : Always met Usually met Seldom met Comment 8. Complication rate (catheter related) i s : Low Acceptable High Comment 9. Complication rate (not catheter related) i s : Low Acceptable High Comment 10. Incidence of psycho/social problems i s : Low Acceptable Comment High - 1 6 0 -11. B u r e a u c r a t i c and a d m i n i s t r a t i v e r e q u i r e m e n t s c a u s e : l i t t l e d i f f i c u l t y some d i f f i c u l t y a g r e a t d e a l o f d i f f i c u l t y o r a r e v e r y t i m e c o n s u m i n g _ Comment 12. Is t h e r e a need t o s t a n d a r d i z e HPN a c t i v i t i e s i n t h e p r o v i n c e i n r e g a r d t o ? T r a i n i n g Yes No S e r v i c e Yes No E q u i p m e n t Yes No O t h e r . Comment 13. A r e c h a n g e s n e e d e d i n t h e HPN s i t u a t i o n i n t h e p r o v i n c e ? 1. 2. 3. 14. F o r P a r t VI do y o u c o n s i d e r y o u r s e l f : E x p e r t K n o w l e d g e a b l e Not K n o w l e d g e a b l e Thank y o u v e r y muct -< f o r y o u r t i m e i n f j ] i;no O L jt t h i s Question 

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