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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.Sc,  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  degree freely  at  this  the  available  copying  of  department publication  of  in  partial  fulfilment  of  the  University  of  British  Columbia,  I  agree  for  this or  thesis  reference  thesis by  this  for  his thesis  and  scholarly  or for  her  Department The University of British C o l u m b i a 1956 Main Mall Vancouver, Canada  DE-6(3/81)  1Y3  I further  purposes  gain  shall  that  agree  may  representatives.  financial  permission.  V6T  study.  requirements  be  It not  that  the  be  Library  an  advanced  shall  permission for  granted  is  for  by  understood allowed  the that  without  make  it  extensive  head  of  copying my  my or  written  ii  ABSTRACT  Parenteral n u t r i t i o n i s a therapy that s u p p l i e s p a t i e n t s with a l l t h e i r n u t r i t i o n a l requirements alimentation.  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 t h e need f o r o r a l  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 t h e 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 t h e l a t e 1960's.  The b e n e f i t o f l o n g - t e r m  parenteral  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 a m b u l a t o r y 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 . begun on such t h e r a p y r e c e i v e d HPN.  In B r i t i s h C o l u m b i a , t h e f i r s t HPN p a t i e n t was  i n 1972. S i n c e t h e n , more than 50 B r i t i s h Columbians have  In March 1986, t h e r e were 24 p a t i e n t s on t h e program.  The  a v e r a g e annual c o s t p e r p a t i e n t was $29,278 and t h e t o t a l 1986 o p e r a t i n g budget was $702,660, n o t 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 a s s e s s m e n t o f t h e 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 t h e 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 looks 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 t h e r e s u l t s w i t h d i f f e r e n t s u b g r o u p s of t h e p o p u l a t i o n , and a t t h e 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 h e 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, t h e l i t e r a t u r e i s r e v i e w e d  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 t h e 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 r e v i e w of HPN t h e r a p y issues o f concern  i n c h i l d h o o d and t h e p s y c h o s o c i a l  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 t h e c u r r e n t HPN s i t u a t i o n i n B.C.  i ii  The study m e t h o d o l o g y 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 b v i o u s 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 study by Robb, r e p o r t e d i n 1983,  not p o s s i b l e .  However, a S e a t t l e  does a l l o w f o r some c o m p a r i s o n .  The main  s o u r c e s o f d a t a were: 1.  A Patient Questionnaire:  by the S e a t t l e g r o u p .  23 B.C.  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  p a t i e n t s , e i t h e r on HPN  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 . 2.  A Health Professional Questionnaire:  a t the time o f  19 (83%)  responded.  T h i s q u e s t i o n n a i r e was  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 w o r k e r s i n B.C. field.  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 ,  and a d m i n i s t r a t o r s , were s u r v e y e d . The p a t i e n t s u r v e y HPN  therapy  i n the  pharmacists,  HPN  dieticians,  17 r e s p o n d e d f o r a r e s p o n s e r a t e o f  89%.  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  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 t i m e on  numbers o f h o u r s p e r week d e v o t e d t o HPN, the most i m p o r t a n t  occupation  Thus, p a t i e n t s  l e s s t h a n one y e a r , o r s p e n t more t h a n 80 h o u r s  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  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  relationships.  P a t i e n t s who were employed, r a t e d the HPN  tively.  O v e r a l l , p a t i e n t s f o u n d the HPN  although  t h i s was  experience  personal  experience  t o be a p o s i t i v e  not t r u e f o r a small group o f p a t i e n t s .  patients achieved  HPN,  and p l a c e o f r e s i d e n c e were  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.  t h a t were o l d e r , had been on HPN  t h a t B.C.  compiled  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, 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 .  complaints  question-  more p o s i one,  Data a l s o i n d i c a t 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 a p p e a r e d t o have more  iv  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 from t h e S e a t t l e  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  study.  The h e a l t h p r o f e s s i o n a l s u r v e y  indicated that professionals considered  the  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 t h e complication support  rate achieved.  provided  However, p a t i e n t f o l l o w - u p  and t h e p s y c h o s o c i a l  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 p o o r .  These h e a l t h  care  p r o f e s s i o n a l s c i t e d p r o b l e m s w i t h t h e program's o r g a n i z a t i o n , t h e need t o standardize  s e r v i c e t o a l l p a t i e n t s , and t h e 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 a r e made f o r improvement i n t h e B.C. HPN  program.  V  TABLE OF CONTENTS PAGE ABSTRACT TABLE OF CONTENTS LIST OF TABLES L I S T OF FIGURES ACKNOWLEDGEMENT CHAPTER 1:  INTRODUCTION  The Study O b j e c t i v e s The R e s e a r c h Q u e s t i o n CHAPTER 2:  DEVELOPMENT OF HOME PARENTERAL NUTRITION LITERATURE REVIEW  i i v viii ix x 1 3 3  4  PART 1:  INTRODUCTION I n d i c a t i o n s f o r HPN Vascular Access. Nutrient Solutions Home P a r e n t e r a l N u t r i t i o n Programs 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  4 5 8 11 12 15  PART 2:  HOME PARENTERAL NUTRITION IN CHILDHOOD  19  PART 3:  PSYCHOSOCIAL ISSUES 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 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 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 A. Lack o f E a t i n g A b i l i t y B. Body Image C. A n x i e t y D. E f f e c t on A c t i v i t i e s E. The R o l e o f t h e H e a l t h C a r e P r o f e s s i o n a l  24 26 27 28 28 29 30 30 33  CHAPTER 3: THE BRITISH COLUMBIA HPN SITUATION C o s t s o f HPN T r a i n i n g and F o l l o w - u p Vancouver General H o s p i t a l St. Paul's Hospital U n i v e r s i t y o f B r i t i s h Columbia Health Sciences Centre H o s p i t a l B.C. C h i l d r e n ' s H o s p i t a l Ministry o f Health.  34 36 39 39 42 44 46 47  vi PAGE CHAPTER 4:  THE THESIS METHODOLOGY  Data S o u r c e s Method o f S t u d y CHAPTER 5: PART 1:  49 50  RESULTS OF THE STUDY  52  THE PATIENT QUESTIONNAIRE  52  Results A. B. C. D.  PART 2:  Patient Characteristics HPN T h e r a p y C l i n i c a l Data Psychosocial E f f e c t s  52 52 56 58 63  Comparison with the S e a t t l e Study A. The S e a t t l e Program B. Comparison o f P a t i e n t P o p u l a t i o n s C. C o m p a r i s o n o f R e s u l t s  73 74 75 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 A. HPN's E f f e c t on P h y s i o l o g i c a l Symptoms 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 C. HPN's E f f e c t on Body Image D. HPN's E f f e c t on S e l f - C o n f i d e n c e E. O v e r a l l R a t i n g o f HPN F. C o n c l u d i n g Comment  81 82  THE HEALTH PROFESSIONAL QUESTIONNAIRE Results 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 B. The Home S i t u a t i o n f o r HPN P a t i e n t s C. P a t i e n t C h a r a c t e r i s t i c s D. HPN S e r v i c 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 F. C u r r e n t S i t u a t i o n i n B.C  PART 3:  49  CHART DATA Vancouver General H o s p i t a l B.C. C h i l d r e n ' s H o s p i t a l C o n c l u d i n g Comments  87 93 94 95 96 97 97 98 99 99 100 103 104 108 108 109 110  vi i PAGE  CHAPTER 6:  DISCUSSION AND CONCLUSIONS  I l l  Clinical Results B.C.'s HPN Program A. P a t i e n t S e l e c t i o n B. T r a i n i n g C. HPN S e r v i c e D. F o l l o w - u p E. C o s t s and B e n e f i t s F. O r g a n i z a t i o n G. P s y c h o s o c i a l I s s u e s  111 112 112 113 113 115 117 119 122  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 I I - 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  vi i i LIST OF TABLES  Table  Title  2- •1 3- •1 5- •1 5- •2 5- •3 5- •4 5- •5 5- •6 5- •7 5-•8 5-•9 5-•10 5-•11 5- •12 5-•13 5-•14  Summary o f HPN R e s u l t s O p e r a t i n g C o s t o f HPN 1986 P a t i e n t C h a r a c t e r i s t i c s and HPN T h e r a p y Patient Characteristics C h a r a c t e r i s t i c s o f HPN T h e r a p y C l i n i c a l Data Reason f o r C a t h e t e r Removal P h y s i o l o g i c a l Complaints 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 I n t e r f e r e n c e with A c t i v i t y P a t i e n t Employment S t a t u s Pre and P o s t HPN 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 E f f e c t s o f HPN (B.C.) E f f e c t s o f HPN ( S e a t t l e ) 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 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 F r e q u e n t P h y s i o l o g i c a l Symptoms vs Age 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 W e i g h t 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 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 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 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 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 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 on HPN 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 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 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 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 S e l f - C o n f i d e n c e 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 Effect Overall 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 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 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 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 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. 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  5-•15 5-•16 5-•17 5-•18 5-•19 5-•20 5-•21 5-•22 5-•23 5-•24 5-•25 5-•26 5-•27 5-•28 5-•29 5-•30 5--31 5-•32 5-•33  Page 18  57 59 59 60 62 64 67 69 72 72 77 79 82 83 84 85 85 86 88 89 90 91 91 92 93 94 95 96 101 104 109  ix  LIST OF FIGURES  Figure  Title  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 t h e s i s on t h i s t o p i c , 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 t o : -  The HPN patients 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 t h e i r time and the  b e n e f i t of t h e i r long-term experience with HPN i n B.C. -  To E l a i n e S t o l a 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 Mil sum, chairman of my t h e s i s committee, whose c l e a r mindedness,  a t t e n t i o n to d e t a i l , and warm personality made w r i t i n g t h i s t h e s i s such a worthwhile 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 a d e q u a t e 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 s o m e t h i n g most o f us t a k e f o r g r a n t e d . Y e t , f o r a very s m a l l p e r c e n t a g e  of the population, t h i s i s not the case.  C e r t a i n i n d i v i d u a l s , b e c a u s e o f m a s s i v e 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 with food a b s o r p t i o n , are not able t o maintain 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 d e a t h .  In t h e l a t e 1960's, t h e  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 t h e prognosis f o r these people.  Parenteral n u t r i t i o n  p r o v i d e s a means o f  supplying patients with a l l o f t h e i r n u t r i t i o n a l requirements; carbohydrate,  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 .  e l i m i n a t e d t h e need f o r o r a l  protein, f a t ,  This therapy e n t i r e l y  alimentation.  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 t h e U n i t e d S t a t e s t o hospitalized patients.  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 t h e 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 . Dudrick  In 1968,  s e n t t h e 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 ,  Home parenteral n u t r i t i o n (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 . in technology  1984).  F u r t h e r advances  have a l l o w e d f o r much improvement t o t h e s y s t e m 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 . Estimates  i n d i c a t e t h a t i n 1984, more than 3,000 p e o p l e i n N o r t h A m e r i c a 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  British  Columbia,  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 t h e mid 1970's, b u t a c c e p t a n c e n u t r i t i o n was a l i t t l e s l o w e r . 1972,  o f home p a r e n t e r a l  The f i r s t home p a t i e n t was begun i n B.C. i n  b u t most were n o t s t a r t e d u n t i l t h e 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 . Duration o f therapy  has ranged from a few months t o 14 y e a r s .  Currently,  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 throughout the province. consider the therapy  T h i s number c o n t i n u e s t o r i s e a s more p h y s i c i a n s  f o rtheir patients.  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 , t h e B.C. C h i l d r e n ' s H o s p i t a l , and t h e 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 B.C.  form o f t h e r a p y .  In 1986,  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 t e e n a g e HPN  patients. 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 t h e p r o v i n c e i s e x p a n d i n g 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 a s s e s s m e n t o f t h e  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 a p p e a r e d 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 h e 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 a s t h e 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 y o u n g e r c h i l d r e n .  -  3  -  THE STUDY OBJECTIVES  The s t u d y o b j e c t i v e s a r e : 1.  To d e s c r i b e t h e 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 h e 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 : 1.  What a r e t h e 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.?  2.  What a r e t h e r e s u l t s f o r d i f f e r e n t sub-groups o f t h e p o p u l a t i o n ? What i n 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?  3.  What a r e t h e 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 ?  4.  What p s y c h o s o c i a l p r o b l e m s 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 ?  5.  Are t h e r e s u b - g r o u p s 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.?  - 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 nutrients intravenously t o sustain 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 put,  home p a r e n t e r a l  nutrition  has f o u r  requirements:  1.  A c c e s s t o the v a s c u l a r s y s t e m .  2.  Provision o f s u i t a b l e n u t r i t i o n including protein, carbohydrate, 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 , t o 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 a s i t u a t i o n which has been d e v e l o p e d therapeutic modality  o f HPN a r e met w i l l f o l l o w .  o v e r time through  It is  e x p e r i e n c e w i t h a new  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 g r o u p s ,  Dudrick  i n Texas, Jeejeebhoy i n Toronto,  C l e v e l a n d ( D u d r i c k , 1984;  notably,  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  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-  Indications for HPN  In the past, many patients with g a s t r o i n t e s t i n a l diseases developed chronic malnutrition  to the point that they were unable to work or enjoy s o c i a l  activities.  Some were confined to hospital and some died as a r e s u l t  (Jeejeebhoy, 1980). these p a t i e n t s .  Parenteral n u t r i t i o n  has r e v o l u t i o n i z e d the outcome for  From the experience f i r s t gained in h o s p i t a l i z e d p a t i e n t s ,  it  became evident that many people could benefit from r e c e i v i n g parenteral n u t r i t i o n f o r a short period of time and a much smaller group would require parenteral n u t r i t i o n  for a long period of time, including some i n d e f i n i t e l y  ( S t e i g e r , 1981).  i s t h i s l a t t e r group who are potential candidates for home  parenteral  It  nutrition.  Before considering any patient for HPN, i t must be c l e a r that  nutritional  support i s needed, that the parenteral route i s the preferred way to provide the nutrients and that the home environment i s preferable to others such as the hospital.  Experience has shown that the following medical s i t u a t i o n s may be  i n d i c a t i o n s f o r HPN  (Jeejeebhoy, 1983).  a)  Total j e j u n o - i l e a l  r e s e c t i o n , so that oral n u t r i t i o n  i s impossible.  b)  Massive small bowel resection or short bowel syndrome r e s u l t i n g i n malabsorption of nutrients and inadequate n u t r i t i o n . cases, HPN can be used u n t i l  the remaining bowel has healed and  i s able to adapt to oral n u t r i t i o n . stopped.  When t h i s occurs HPN i s  If more than 70% of the small bowel i s l o s t ,  malabsorption w i l l  In some  persistent  usually require l i f e l o n g HPN to maintain  q u a l i t y of l i f e and s u r v i v a l (Dudrick, 1984).  - 6 -  c)  Chronic bowel obstruction not amenable to surgical a l l e v i a t i o n where eating causes pain and vomiting.  This may occur with  Crohn's d i s e a s e , scleroderma and pseudo obstruction syndrome.  d)  End jejunostomy syndrome, where patients have l o s t those areas of small and large bowel where i n t e s t i n a l contents are concent r a t e d , r e s u l t i n g in copious l o s s of i s o t o n i c bowel contents after eating.  Patients absorb nutrients but s u f f e r severe  f l u i d and e l e c t r o l y t e d e f i c i e n c i e s .  e)  Growth r e t a r d a t i o n , e s p e c i a l l y as a consequence of Crohn's disease in adolescents.  Cessation of growth and maturation  due to poor intake of c a l o r i e s can be reversed with the use of both oral and parenteral n u t r i t i o n a l  support.  Two other s i t u a t i o n s are more c o n t r o v e r s i a l :  f)  Bowel r e s t (use of parenteral n u t r i t i o n to avoid oral  intake)  has been shown e f f e c t i v e in improving symptoms of a number of g a s t r o - i n t e s t i n a l diseases i n c l u d i n g p a n c r e a t i t i s , bowel f i s t u l a s , r e s i s t a n t sprue and e s p e c i a l l y Crohn's disease.  The theory i s  that d i v e r t i n g the luminal stream from the inflamed bowel allows healing to occur.  However, whether long term HPN i s i n d i c a t e d ,  - 7 -  or whether s h o r t e r periods o f parenteral 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  g)  Adjunct t o cancer therapy.  (Jeejeebhoy,  1980).  Cancer i s a s s o c i a t e d with 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  prognosis.  However, t h e 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 is not c l e a r .  cachexia  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 , O t h e r s 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  1984).  recurrent  c a n c e r who a r e u n a b l e t o t a k e a d e q u a t e 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 , u n a b l e 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 n o t t o p r o l o n g s u r v i v a l b u t 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 ,  recent  r e p o r t s from t h e N a t i o n a l R e g i s t r y New York Academy, t h e 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 t h e 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 f r o m 1977 when t h e N a t i o n a l 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  Registry  f o r by  m a l i 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 t h e 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 -  Vascular  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 t h e 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 dialysis.  (AV) shunt s i m i l a r t o ones used f o r m a i n t e n a n c e hemo-  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 b l o o d 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 a t 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 known as t h e " 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  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 maintain t h e shunts 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  ( 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  and i n f e c t i o n s e c o n d a r y  t o the hypertonic  d e x t r o s e s o l u t i o n s ( L e e s , 1981). Subsequently  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 a t t h e end o f a l o n g s u b c u t a n e o u s 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 . i n t o t h e c u f f anchored  In two t o t h r e e weeks, i n g r o w t h o f t h e f i b r o u s t i s s u e  t h e c a t h e t e r , preventing dislodgement  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 t h e c a n n u l a t e d 1975).  and c l o s i n g t h e vein (Ivey,  The e x t e r i o r p a r t o f t h e 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 t h e 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 b u t was c o m p l i c a t e d by such problems as pneumothorax, hemothor a x , 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 D a c r o n c u f f e d s i l i c o n e  c a t h e t e r ( F i g u r e 2-1).  rubber  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.  It 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 t h e 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 atrium.  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 o u t t h r o u g h a s u b c u t a n e o u s 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 t h e 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 c h o s e n p r e - o p e r a t i v e l y so t h e 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) 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 .  ( F i g u r e 2-2).  Its construction,  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 ( D u d r i c k , 1984).  today  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 l o w e r 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 s e c o n d a r y  to c l o t  f o r m a t i o n w i t h i n t h e lumen ( D u d r i c k , 1 9 8 4 ) . In 1981, improved.  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  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  again  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  introducers, originally  f o r t h e p l a c e m e n t 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 p l a c e m e n t .  designed  Placement continues  t o be done i n t h e o p e r a t i n g room u n d e r 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 p l a c e m e n t o f the c a t h e t e r t i p .  - 10 Figure 2-1.  Reference  -  Figure 2-2.  The B r o v i a c  Catheter  VGH TPN N u r s i n g M a n u a l ,  Insertion  (A)  1983.  of a Central Vein  Catheter  (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 p e r m a n e n t v a s c u l a r a c c e s s b y c e n t r a l v e i n catheter. T h e s e 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 for the 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 . (Jeejeebhoy 1983).  - 11 -  Nutrient  Solutions  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  to 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 adolescents.  and  M o s t 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).  Solutions  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 C a l o r i e sources  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 .  are h i g h l y concentrated  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 acids.  o r c r y s t a l l i n e amino  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 e l e m e n t s are added t o the  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 .  c a n n o t be mixed and are run i n t r a v e n o u s l y Methods o f i n t r a v e n o u s  glucose  Fat emulsions  separately.  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 .  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 .  In  Pre-discharge,  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.  (Dudrick, 1984).  One e x c e p t i o n  In 1976,  vest i n f u s i o n system. continued  t h e i r n u t r i t i o n support s e r v i c e produced a portable  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  i n a small group o f HPN  a d a p t to a s c h e d u l e  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  p a t i e n t s who  of i n t e r m i t t e n t feeding.  cannot or w i l l not t o l e r a t e or 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 to hold  - 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 to a miniature  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  Power s u 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  batteries.  vest.  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 a d a p t e d t o h o l d n u t r i e n t s o l u t i o n s . M o s t 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 the day.  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  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  p n e u m a t i c p r e s s u r e s y s t e m ( 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  nutrition patients  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 . 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 , d i e t i c i a n s , and s o c i a l w o r k e r s who  Here t h e r e i s pharmacists,  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 .  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 One o f the e a r l i e s t HPN  programs was  Cornell University ( S h i l s , 1 9 7 5 ) .  A 1975  e s t a b l i s h e d i n New  program.  varies.  York by S h i 1s a t  r e p o r t of t h e i r f i r s t  s t r e s s e d the i m p o r t a n c e 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  experience  p a t i e n t s f o r the  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  In  following:  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 with expectations 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.  of a  2.  A s u i t a b l e home e n v i r o n m e n t w i t h s u p p o r t i v e f a m i l y members o r 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 technique.  HPN  - 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 n u r s e t o p e r i o d i c a l l y v i s i t t h e home.  4.  When t h e p a t i e n t l i v e s some d i s t a n c e from t h e h o s p i t a l , t h e 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 t h e 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 i m p o r t a n c e 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 stressed.  was a l s o  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 t h e r e s u m p t i o n o f employment i f deemed m e d i c a l l y s u i t a b l e . the a v o i d a n c e  A n o t h e r f e a t u r e o f t h e r e h a b i l i t a t i o n program was  o f e x c e s s i v e dependence by p a t i e n t s on t h e f a m i l y o r v i s i t i n g  nurse. At t h e 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 t h e 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 c h o s e n b a s e d 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 t h e 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 .  Patient  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 t h e c a t h e t e r , a s e p t i c use and m a i n t e n a n c e o f intravenous  t u b i n g and t h e 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 t h e 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 h o u r s a day f o r emergency situations.  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 p e r 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 . o f t e n as n e c e s s a r y progress.  V i s i t i n g n u r s e s make home v i s i t s as  f o r f o l l o w - u p t e a c h i n g and d o c u m e n t a t i o n o f t h e p a t i e n t ' s  O t h e r team members a r e 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 p h y s i c i a n s and a p h a r m a c i s t  two  and r e q u i r e s t e n t o f o u r t e e n days to c o m p l e t e .  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 are provided with 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 f r o m the Toronto General Hospital, u n l i k e the i n s t i t u t i o n s m e n t i o n e d a r e not r e q u i r e d t o make t h e i r own  other  solutions; instead,  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  s y s t e m 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 t i m e needed t o p r e p a r e HPN b e n e f i t s to 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 with l i m i t e d space. cations of s o l u t i o n composition  can be a c h i e v e d w i t h o u t p a t i e n t  s o l u t i o n s and As w e l l , m o d i f i re-education  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 m o n t h l y s u p p l i e s a t the pharmacy.  T r a i n i n g in other  r e s p e c t s i s s i m i l a r t o t h e o t h e r g r o u p s , 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 t h e 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 C l 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 t h e m u l t i d i s c i p l i n a r y HPN each c a n d i d a t e  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  f o r p o s s i b l e HPN t h e r a p y  (Fleming,  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 , 1 9 8 3 ) .  T h i s p e r s o n ' s a s s e s s m e n t 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 .  T h e c l i n i c s t r e s s e s the i m p o r t a n c e  follow-up and monitoring o f p a t i e n t s a f t e r discharge t o minimize  of regular  complications.  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 a n d 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 v e r y good.  programs have, i n g e n e r a l , been  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 .  Further reports indicate that  most HPN p a t i e n t s c a n resume a moderate d e g r e e o f normal a c t i v i t i e s a n d 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 . T h e most common p r o b l e m s 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 t h e 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 t h e D a c r o n c u f f i s most common and u s u a l l y r e s p o n d s t o rigorous local treatment.  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 b u t  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 a v e r a g e 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 t h e i n c i d e n c e o f catheter septicemia (Rannen, 1986). Eighty-two  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  e p i s o d e per 1.9 y e a r s .  t o one  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 t h e newer B r o v i a c c a t h e t e r than w i t h t h e 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 p l a c e m e n t i n t h e c h e s t showed l e s s p r o b l e m s 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 , a n d 5 c a s e s w i t h c a t h e t e r changes a l o n e .  T h e 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 g r o u p s .  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 a n d 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 prevent catheter  septicemia.  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 c a n a r i s e due t o d e f i c i e n c y o r e x c e s s o f any n u t r i e n t such a s 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 a r e commonly reported.  T h e c a u s e s o f t h e s e p r o b l e m s a r e n o t 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 surgery (Ladefoged, problem.  1985).  Wolfe suggested  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 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 that l i v e r disease associated with parenteral  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 t h e 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 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 ( W o l f e ,  parenteral  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 t o A u g u s t 1977  ( G u n d f e s t , 1979).  longest maintained  A v e r a g e c a t h e t e r l i f e was 6 months w i t h t h e  c a t h e t e r a t 19 months.  o b s t r u c t i o n , s e p s i s , b r e a k a g e and s l i p p a g e .  Reasons f o r c a t h e t e r removal i n c l u d e d 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 a n d 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 a v e r a g e 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 p r i m a r y 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  properly follow aseptic technique 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  and d i e d as a r e s u l t o f s e p s i s .  Another  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  preparation. 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 maintained  f r o m 3 months t o 4 y e a r s on HPN ( I v e y , 1975).  Complications  in this  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 , and m a l p o s i t i o n .  Seventy-eight  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 a v e r a g e c a t h e t e r l i f e o f 9.4 months ( r a n g e 1-36 m o n t h s ) . however, a marked d e c r e a s e improved technique  leakage  S i n c e 1973,  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  f o r placing the heparin lock.  due t o an  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 e r 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 , 1 9 7 6 ) .  More r e c e n t  reports  f r o m 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 h e most common reason f o r removal (Robb, 1983). Dudrick  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). y e a r s , accounted  T h e s e p a t i e n t s , who were aged 6 months t o 78  f o r more than 100 p a t i e n t y e a r s o f HPN.  was one c h i l d who was m a i n t a i n e d years of h i s l i f e .  I n c l u d e d i n t h i s group  on p a r e n t e r a l n u t r i t i o n f o r t h e e n t i r e 13 1/2  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  t e m p o r a r y 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 f o r m e r group had a c a t h e t e r l i f e on a v e r a g e 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 e r 3 c a t h e t e r y e a r s .  The l a t t e r group's a v e r a g e  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 p e r 2.6 c a t h e t e r years.  No d e a t h s were r e p o r t e d due t o HPN.  a t t r i b u t e d to three f a c t o r s :  The low i n c i d e n c e o f s e p s i s was  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 t h e i m p o r t a n c e o f a d h e r i n g t o them; second, t h e home e n v i r o n m e n t which i s s a f e r than t h a t o f t h e 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 people. The T o r o n t o G e n e r a l H o s p i t a l group showed i n 40 p a t i e n t s an a v e r a g e 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 catheter.  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 t h e 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 n o t p r a c t i c a l t o compare  c r i t i c a l l y t h e r e s u l t s o f t h e s e s t u d i e s because t h e y c o v e r o v e r 11 y e a r s o f HPN t h e r a p y from i t s b e g i n n i n g , and b e c a u s e t h e 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 v a r y w i t h each s t u d y .  However, a l l r e p o r t s do  s u 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  Reference  # of Pt.  Septicemia 1 case per  Adults  Catheter L i f e Range Mean (mon) (mon)  Ivey 1975  40  R i e l l a 1976  43  G u n d f e s t 1979  22  6  J e e j e e b h o y 1980  40  15.5  Robb 1983  49  22  S t e i g e r 1983  50  D u d r i c k 1984  133  2.6 y e a r s  Rannen 1986  43  1.9 y e a r s  Hospitalization % HPN Time  1-36 5.5 y e a r s  9.4  13  - 19 -  T a b l e 2-1. Summary o f HPN R e s u l t s C o n t ' d . Reference  # of Pt.  Septicemia 1 case per  Chi 1 d r e n  34  1978/79  Cannon 1980  8  R a l s t o n 1984  8  a.  Hospitalization % HPN Time  9  6  Byrne 1977 Strobe!  Catheter L i f e Range Mean (mon) (mon)  5.5  years 6-23 66V38V23%  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 a s 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 h e p a s t f i f t e e n y e a r s ,  total  p a r e n t e r a l n u t r i t i o n has been advanced t o t h e 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 t h e s e v e r i t y o f t h e 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 babies t o adolescents,  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 t h e t h e r a p y has r a n g e d 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  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 .  Nevertheless,  parenteral i t is  c l e a r that c e r t a i n c h i l d r e n with severe 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 t h e s e 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 g r a d u a l r e s u m p t i o n 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 t h e t o t a l  pediatric  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 , b u t 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 L o s 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 t h e 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 adults.  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). development  Due t o t h e p h y s i c a l growth  and  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 a r e 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 s e c o n d a r y t o malnutrition. these uses.  R e p o r t s from UCLA o v e r t h e p a s t t e n y e a r s have o u t l i n e d some o f 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, t h e 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 t h e 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 t h e d u r a t i o n o f t h e 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 b u t 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 t h e c a r e o f t h e 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 w e e k l y 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 m o n t h l y u n l e s s p r o b l e m s 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  w e e k l y from t h e h o s p i t a l pharmacy and k e p t under r e f r i g e r a t i o n i n t h e 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 t a l o f 103 days o r 9% o f t h e combined e x p e r i e n c e were due t o t h e p r i m a r y  t o h o s p i t a l 13 times f o r a on HPN.  Seven  re-admissions  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 p r o b l e m s w i t h e l e c t r o l y t e o r c a l o r i e i m b a l a n c e .  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 t h e 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 , 1 9 7 8 ) . 20 1/2 y e a r s .  The p a t i e n t s ' ages r a n g e d from 1 1/2 t o  I n d i c a t i o n s f o r HPN i n 17 o f t h e s e p a t i e n t s was C r o h n ' 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 , pancreatitis.  c y s t i c f i b r o s i s and c h r o n i c  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 .  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  Nutrient solutions glucose  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 fat solutions.  A l l s o l u t i o n s were r u n 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 an i n d i v i d u a l range o f 23 t o 786 d a y s .  with  A t t h e 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 t h e 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 s u b s e q u e n t t r e a t m e n t s b e c a u s e o f symptom r e l a p s e .  with  HPN  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  p a r a m e t e r s 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 a l b u m i n and w e i g h t g a i n 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  and  curves  ( 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 metabolic  the  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 r e m a i n e d 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 i m p r o v e d 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 oids to suppress Dahlstrom.  disease 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  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 with inadequate  by  functioning  of the 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  long-term  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 w e i g h t and h e i g h t  (Dahlstrom,  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  a l s o r e p o r t e d t o be i m p r o v e d .  s t a t e , q u a l i t y of l i f e  was  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  s c h o o l and t h e 5 o l d e r ones resumed p a r t - t i m e work o r a d v a n c e d e d u c a t i o n .  to  All  p a r t i c i p a t e d i n p e e r 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 contact sports.  I n f e c t i o n r a t e was low, one c a s e p e r 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 adults.  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  hydrolysate,  - 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 t h e baby showed intolerance to the former.  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  c h o s e n f o r t h e i n f a n t s r a t h e r than t h e usual t e n 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 m i g h t r e s u l t i n c a r d i o v a s c u l a r 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 t o hunger.  s i x t e e n hour p e r i o d .  decompensation  A l l infants t o l e r a t e d the  Each month, from 2 t o 6 months o f age, t h e 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 t h e 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 p e r day. A t t h e t i m e 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 a g e . A l l had a c h i e v e d standard  growth g r e a t e r t h a n t h e 5 t h p e r c e n t i l e on  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  growth i n t h e f i r s t 2 y e a r s o f l i f e . 23 months.  optimal  The range o f c a t h e t e r l i f e was from 6 t o  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.  g r o u p s 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 ,  Other  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 t h e p h y s i c i a n u n t i l t h e age o f 6 months, a f t e r w h i c h v i s i t s were o n l y as needed. d a i l y n u t r i t i o n volumes was, o f c o u r s e , c h i l d r e n i n t h i s age g r o u p .  Metabolic  Frequent increases i n  r e q u i r e d due t o t h e r a p i d growth o f complications  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 t h e 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, 1 9 8 0 ) . attempted t o evaluate the developmental milestones  T h i s study  of the children.  also  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 n o r m a l , a p p r o p r i a t e  develop-  mental m i l e s t o n e s  Further,  c o u l d be e x p e c t e d d u r i n g t h e f i r s t 2 y e a r s o f l i f e .  i t was f e l t t h a t t h e s i n g l e most i m p o r t a n t  factor contributing to normalization  o f n e u r o l o g i c a l d e v e l o p m e n t i s t h e home e n v i r o n m e n t .  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 d e v e l o p m e n t a l e x a m i n a t i o n s (Cannon, 1980). In 1984, (Ralston,  a f u r t h e r r e p o r t was  1984).  published  on the outcomes o f t h e s e c h i l d r e n  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  a v e r a g e 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 a v e r a g e months.  At the t i m e o f the f i r s t d e v e l o p m e n t a l t e s t a t 6 months o f age,  c h i l d r e n had s p e n t on a v e r a g e 66% o f t h e i r l i v e s i n h o s p i t a l .  17.2 the  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 s p e n t i n h o s p i t a l , and 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 s p e n t i n the 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 b e h a v i o u r d e v e l o p m e n t which was zation.  o f growth  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  by  hospital. and  of h o s p i t a l i -  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 a p p e a r i n T a b l e  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  2-1.  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 v e r y s h o r t bowel syndrome as a r e s u l t o f m a s s i v e s u r g e r y , HPN was  of b e n e f i t in allowing  t o a d a p t and i n c r e a s e y e a r o r more was parenteral  PART 3:  capacity  (Dorney, 1985).  In some c a s e s , a  required before patients could ultimately survive  without  nutrition.  PSYCHOSOCIAL ISSUES  Home p a r e n t e r a l therapy.  i t s absorption  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  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  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 s o u r c e o f f e e d i n g ,  sustaining operation  of 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 a d h e r e n c e 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 -  basis f o r the duration o f therapy.  I t i s a form o f t h e r a p y t h a t demands major  a d j u s t m e n t s i n t h e l i f e s t y l e o f t h e 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 ' e m o t i o n a l  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  d e t e r m i n e s t h e 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 .  ultimately  Despite t h i s , very  little  d i s c u s s i o n o f t h e 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 requirements  o f t h e 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 t h e  l i t e r a t u r e u n t i l t h e 1980's. the e x p e r i e n c e some g e n e r a l  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  o f a s m a l l number o f p a t i e n t s . themes t h a t r u n through  Despite the sparseness,  this literature.  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 program.  F i r s t i s t h e awareness o f  a f t e r b e g i n n i n g an HPN  Second i s t h e e f f e c t t h a t HPN has on t h e l i f e s t y l e s o f t h e p a t i e n t and  their families.  T h i r d i s the consensus that 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 e n v i r o n m e n t a r e i m p o r t a n t HPN.  there are  f o r a successful adjustment t o  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 t h e program regimen and t h e d e g r e e o f s u p p o r t i v e ness o f t h e home e n v i r o n m e n t ( K o i t h a n , 1985). an i m p o r t a n t  determinant  I t i s a l s o g e n e r a l l y agreed  that  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 t o c a r e  w h i c h f o c u s e s n o t o n l y on t h e b i o l o g i c a l needs o f t h e p a t i e n t , b u t t h e psychos o c i a l and e m o 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 t h e 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 . i n f o r m a t i o n comes from t h e 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 S e a t t l e , Cleveland, Rochester  and Copenhagen.  The  a t Toronto,  - 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, c r u d e l y be p l a c e d i n t o t h r e e p h a s e s .  a l t h o u g h unique t o each i n d i v i d u a l , can 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 t h e a b i l i t y t o e a t ( P r i c e , 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 t h e most t r a u m a t i c .  i s e s p e c i a l l y s o f o r p a t i e n t s who  This  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; 1981).  1979;  Robinovitch,  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  initially  a r e u n a b l e t o 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 p e r m a n e n t l y  depend on p a r e n t e r a l n u t r i t i o n .  F o r t h e l a r g e r group o f  p a t i e n t s who have not had an a c 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 , t h e i n i t i a l is less traumatic.  adjustment  T h e s e 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 t h e y 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 w o r k e r s 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 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 t h e 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 . a means t o r e g a i n i n d e p e n d e n c e ( R o b i n o v i t c h , 1981).  before they  F o r many, i t o f f e r s  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  O f t e n t h e i r f e e l i n g s o f a n g e r , l o s s and f e a r have a l r e a d y  been worked t h r o 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 g r a d u a l 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 t h e l o s s , a c c e p t  - 27 -  l i m i t a t i o n s , a d a p t t o 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 t h e p a t i e n t has  a t t a i n e d a maximal d e g r e e 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 t h e 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 . 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 ,  The t r a n s f e r from h o s p i t a l  1978).  The final stage o f a d j u s t m e n t o c c u r s o u t s i d e t h e 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 a d j u s t m e n t t o HPN. concluded  t h a t i t was t h e 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 ,  s u p p o r t s y s t e m t h a t make t h e d i f f e r e n c e between a m e n t a l l y 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 s u g g e s t e d  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  healthy  Price and f a m i l y adaptation  that there i s a  social-emotional  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 A p p a r a t u s  A number o f a u t h o r s have d e s c r i b e d t h e f e e l i n g s HPN p a t i e n t s towards t h e 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  develop that a love-  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 author suggests  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 m a r i t a l d i s c o r d , a n g e r and r e j e c t i o n ( G u l l e d g e , 1980). 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  problems,  Abram, i n a c l a s s i c often f e l t a loss o f  i d e n t i t y and a f e e l i n g o f d e h u m a n i z a t i o n b e c a u s e o f t h e 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  i n d e p e n d e n c e ; b e c a u s e 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  with  - 28  -  the program and a c c e p t t h e i r dependence on i t , y e t a t t h e same t i m 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 u n a b l e t o g i v e up t h e 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 t h e program and r e f u s e t o a c c e p t t h e r e g i m e n .  He s u g g e s t e d  that 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 e n v i r o n m e n t and a h i g h d e g r e e 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 . parenteral n u t r i t i o n apparatus  Psychosocial  S i m i l a r f e e l i n g s and p r o b l e m s r e g a r d i n g t h e  have been c i t e d .  I s s u e s f o r t h e HPN P a t i e n t  The e m b a r k a t i o n 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 a d j u s 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 families.  F e e l i n g s o f d e p r e s s i o n o v e r t h e i n a b i l i t y t o e a t , a change i n p e r 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 h e 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 t h e r o l e o f t h e 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 t h e s i n g l e most s i g n i f i c a n t f a c t o r encountered  by t h e 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 e v e r y d a y l i v i n g  and a m a j o r a s p e c t o f t h e s o c i a l i z i n g p r o c e s s .  I t imposes d e m a r k a t i o n s i n t h e  day, i t may be a time when t h e 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 a d a p t ( 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 t i m e s o b s e s s e d  with  f o o d and the o r a l i n t a k e and t h a t t h e y m i s s e d the d e m a r k a t i o n s o f the day which m e a l t i m e had a l w a y s p r o v i d e d .  MacRitchie  suggested  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 w h i c h had been i n c o r p o r a t e d i n t o t h e p s y c h e from the e a r l i e s t s t a g e o f i n f a n c y 1979).  (MacRitchie,  O t h e r a u t h o r s p o i n t e d out t h a t t h e p a t i e n t was c o n s t a n t l y reminded o f  the i m p o r t a n c e o f f o o d by t h e media ( P e r l , 1 9 8 0 ) . p a t i e n t s t o spend m e a l t i m e i n the usual way, person c i t e d the importance of another  T h i s author encouraged his  e a t i n g what t h e y c o u l d .  f a m i l y member who  Another  could a s s i s t with  management o f t h e m e a l t i m e 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  the  (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 experienced  by t h e 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 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 .  patients  Many r e p o r t t h a t  they l o o k e d " w e i r d " o r deformed o r were no l o n g e r a whole p e r s o n P r i c e , 1979).  type  ( P e r l , 1980;  - 30 -  C.  Anxiety  Anxiety  i s an e m o t i o n e x p r e s s e d  by most HPN  patients.  There i s a high  d e g r e e 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 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 o p e r a t i o n o f the e q u i p m e n t . therapy  therapy.  p r o c e d u r e s , and  the  P a t i e n t s a r e c o n c e r n e d about the d a n g e r s o f the  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.  Perl  reported  t h a t the d e g r e e 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 t i m e s 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 p e r s o n  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 e v e r y 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 n e o p h y t e TPN p a t i e n t s i n a d d i t i o n t o some  ( P r i c e , 1979). patient.  veterans  J o h n s t o n a l s o i n d i c a t e d the i m p o r t a n c e o f o t h e r HPNers to the  She s u g g e s t s t h a t s u p p o r t g r o u p s 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 p r o b l e m s w i t h o t h e r HPN  D.  E f f e c t on  patients (Johnston,  Activities  A number o f a u t h o r s l i f e is affected.  draw a t t e n t i o n t o the way  Many p a t i e n t s who  i n w h i c h the HPN  often results in chronic  the  T h i s , coupled with sleep d i s t u r -  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  malfunction,  patient's  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  n i g h t a r e awakened s e v e r a l t i m e s t o v o i d . bance  1981).  fatigue.  - 31 -  Marital  relations  and s e x u a l a c t i v i t y a r e a l s o a f f e c t e d .  Several  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 t h e HPN was l e s s t r a u m a t i c , b u t where t h e 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 t h e 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  confidence  i n t h e i r a b i l i t y t o p e r f 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 . found t h a t love-making  l a c k e d s p o n t a n e i t y b e c a u s e o f t h e 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 t h e 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; 1981).  Others  Ladefoged,  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 s e x u a l Social  life  activity.  and l e i s u r e t i m e 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 d e 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 t h e time commitment to HPN, b u t 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 b e c a u s e 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 a s r e a s o n s  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 d e a l 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 a b r o a d .  Many p e o p l e 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 t h e 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 s o , 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 s e k e e p i n g , l e i s u r e t i m e 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 m e n t i o n e d when r e p o r t i n g on t h e adjustments  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 n o t o n l y t h e  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 t h e  -  -  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 1980).  He a l s o c o n c l u d e d  b e g i n n i n g HPN,  i t was  Many p a r t n e r s o f HPN  than the p a t i e n t  (Gulledge,  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  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 . p a t i e n t s found t h a t a d d i t i o n a l t i m e was  r e q u i r e d to a s s i s t  w i t h h o u s e k e e p i n g , 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 t h e 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 c a u s e d d i f f i c u l t i e s (Ladefoged, was d i s r u p t e d when an HPN tion.  1980).  Other authors suggested  t h a t the f a m i l y  balance  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 -  They u r g e d f a m i l i e s and p a t i e n t s t o share e m o t i o n s ( P r i c e , 1980).  Johnston  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  in d i s c u s s i o n s with p r o f e s s i o n a l s p r i o r to h o s p i t a l discharge. how p a t i e n t s who  had been d e p e n d e n t b e f o r e HPN may  She  described  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 (Johnston, w o r k e r s may  be o f h e l p i n such s i t u a t i o n s .  1981).  She s u g g e s t e d  that social  In o t h e r c a s e s , p a t i e n t s may  t h e m s e l v e s more d e p e n d e n t 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 . 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 .  find The  Many f e l t p l e a s e d t o a s s i s t t h e  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 r e q u i r e i t (Gulledge, 1980).  they  B a r f o o t s t r e s s e d the i m p o r t a n c e o f m e e t i n g the  f a m i l y ' s s o c i a l needs ( B a r f o o t , 1 9 8 6 ) .  She f e l t t h a t a n u r s e f a m i l i a r w i t h  the  p a t i e n t and t h e 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 t h e 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 t h e 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 s e n s e 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 function.  - 33  E.  -  The Role o f t h e H e a l t h C a r e 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 h e 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 t h e t h e r a p y i s v a r i a b l e .  However, t h e  c o n s e n s u s 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 w o r k e r s 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  a b o u t body image, s e x u a l 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  (Johnston,  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  1981).  meet t h e s e needs.  t h e r a p y n u r s e may be a b l e t o  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 c o u n s e l  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 i m p o r t a n c e o f t h e team approach was s t r e s s e d by a number of workers i n the f i e l d . pharmacist,  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 ,  nurse,  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 n u r s e were a l l r e q u i r e d t o  h a n d l e t h e p h y s i c a l and p s y c h o l o g i c a l p r o b l e m s f a c e d by such p a t i e n t s (Abram, 1970).  Johnston  d e s c r i b e d t h e 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 t h e 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 a p p r o a c h t o t h e i r management and c a r e p l u s o n g o i n g s u p p o r t from t h e i r c a r e g i v e r s 1981).  Gulledge  (Johnston,  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 psychological issues important  o f the  t o t h e p a t i e n t s due t o l a c k o f time o r 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 n o t  be p o s s i b l e f o r a l l t h e 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 b u t 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  which a r e s i g n i f i c a n t t o each p a t i e n t .  issues  - 34 -  CHAPTER 3:  Home p a r e n t e r a l  THE BRITISH COLUMBIA HPN  SITUATION  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  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 . p a t i e n t s were added i n t h e 1970's. administer  parenteral  Several  1972  more  Some were t r a i n e d i n Vancouver t o s e l f -  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 , W a s h i n g t o n .  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 a l w a y s 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 Health.  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 t h e n 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  a r r a n g e m e n t s 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 o r 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  policies.  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 p a t i e n t s , namely t h e V a n c o u v e r General Vancouver.  f o r t r a i n i n g HPN  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  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 f u n d e d 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. f o r HPN t e a c h i n g have come from o t h e r b u d g e t s i n t h e h o s p i t a l . of B r i t i s h C o l u m b i a H e a l t h S c i e n c e s  Monies  The U n i v e r s i t y  C e n t r e A c u t e 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  hospitals.  S i n c e 1983, more t h a n 20 p a t i e n t s p e r y e a r have r e c e i v e d HPN i n B.C. 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 a t S t . P a u l ' s H o s p i t a l , 6 a t V a n c o u v e r General C h i l d r e n ' s H o s p i t a l , and 1 a t Royal I n l a n d  Hospital.  H o s p i t a l , 4 a t B.C.  In  - 35 -  Unfortunately,  data a r e n o t a v a i l a b l e t o show t h e 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 t h e p a s t 15 y e a r s . B.C.  M i n i s t r y o f Health did not recognize  Part o f the reason i s that the  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 r e v i e w by t h e government and changes a r e e x p e c t e d i n t h e n e a r 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 h e s i t u a t i o n a s i t s t a n d s i n B.C. a t t h e time o f w r i t i n g  (April,  1987). Government f u n d e d 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  p r i m a r y s o u r c e i s t h e 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 t h e 1970's as i t was t h e n t h e o n l y government agency e q u i p p e d t o n a n d l e t h e w a r e h o u s i n g 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,  t h e s e 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, b u t i t p r o v i d e s no c l i n i c a l i n p u t n o r is i t involved i n solution preparation.  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 in the province.  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 t h e 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 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 .  with  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 ) a s w e l l a s 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 a p p r o v e d 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 t h e 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 e l e m e n t s ) must s t i l l  be added by t h e p a t i e n t .  both c o m p l e t e l y from KDS.  A l l p a t i e n t s who r e c e i v e t h e s e  mixed and c o r e , a r e s t i l l  solutions,  required t o order a n c i l l a r y  supplies  - 36 -  In o r d e r f o r a p a t i e n t t o r e c e i v e HPN funded by t h e B.C. M i n i s t r y o f H e a l t h , t h e p a t i e n t ' s p h y s i c i a n must a p p l y t o KDS i n w r i t i n g . r e q u e s t f o r s e r v i c e has ever been d e n i e d .  A p p a r e n t l y , no  Approval f o r a d m i s s i o n t o the s e r v i c e  must be o b t a i n e d from t h e M e d i c a l D i r e c t o r o f t h e Kidney D i a l y s i s S e r v i c e . minimum o f two weeks i s r e q u i r e d  f o r approval.  A  The p a t i e n t ' s p h y s i c i a n must  a l s o send t h e HPN p r e s c r i p t i o n t o t h e Vancouver Bureau p h a r m a c i s t . p h y s i c i a n wishes t h e p a t i e n t t o r e c e i v e T r a v a c a r e pre-mixed  I f the  solutions, a written  r e q u e s t must be s u b m i t t e d a t t h e time o f a p p l i c a t i o n t o t h e M e d i c a l D i r e c t o r o f KDS who has t h e power t o make t h e f i n a l P a t i e n t s are responsible  f o r re-ordering  d e c i s i o n (KDS HPN P r o c e d u r e s , s u p p l i e s and s o l u t i o n s .  Orders a r e  r e c e i v e d by t h e Vancouver Bureau p h a r m a c i s t and f i l l e d by t h e M e d i c a l t i o n Center of the M i n i s t r y of H e a l t h .  1986).  Distribu-  D e l i v e r i e s t o t h e p a t i e n t s o c c u r every 6  weeks where p a t i e n t s s e l f - m i x t h e s o l u t i o n s , o r every 3 months, where they r e c e i v e pre-mixed  solutions.  More f r e q u e n t d e l i v e r i e s can be arranged i f a  p a t i e n t has s t o r a g e problems. r e q u i r e some t i m e .  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  F o r 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 t h e p h y s i c i a n pre-mixed  i s r e q u i r e d 4 w o r k i n g days b e f o r e r e l e a s e .  For  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 r e q u i r e d 6 w o r k i n g days  b e f o r e r e l e a s e and t h e change w i l l p r e p a r e d (KDS HPN P r o c e d u r e s ,  o c c u r when t h e next batch o f s o l u t i o n s i s  1986).  Costs o f HPN  C o s t o f HPN i s h i g h .  Operating costs f o r a d u l t s a r e 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 p e r day f o r c o r e s o l u t i o n s , and  - 37 -  $84.00 p e r day f o r s e l f - m i x .  Operating  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 .  costs include nutrition solutions, 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 , a r e on a v e r a g e $131.00 p e r day.  Total  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 f o r 24 p a t i e n t s .  T a b l e 3-1. A.  $702,660  A breakdown o f t h e s e c o s t s a p p e a r s i n T a b l e 3-1.  Operating  C o s t o f HPN 1986  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 p e r y e a r ) $ p e r 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 Lipid Solutions T u b i n g and A n c i l l a r y S u p p l i e s Vitamins  96 20 20 4 140  C o s t p e r p a t i e n t p e r y e a r = $140 x 313 days = $43,820 Cost f o r 2 patients B.  = $87,640  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 p e r week = 5, o r 261 p e r y e a r ) $ p e r 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 Lipid Solutions T u b i n g and A n c i l l a r y S u p p l i e s Vitamins  67 20 20 4 111  C o s t p e r p a t i e n t p e r y e a r = $111 x 261 days = Cost f o r 8 p a t i e n t s  $28,971  = $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 5, o r 261 p e r y e a r )  number o f i n f u s i o n s p e r week = $ p e r 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 Lipid Solutions T u b i n g and A n c i l l a r y S u p p l i e s Vitamins  40 20 20 4 84  C o s t p e r p a t i e n t p e r y e a r = $84 x 261 days = C o s t f o r 10 p a t i e n t s  $21,924  = $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 p e r week = 6, o r 313 p e r y e a r )  number o f i n f u s i o n s $ p e r 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 Lipid Solutions T u b i n g and A n c i l l a r y S u p p l i e s Vitamins  85 20 20 6 131  C o s t p e r p a t i e n t p e r y e a r = $131 x 313 days = $ 41,003 Cost 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 p e r 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 n o t 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 p e r pump) o r IV p o l e s ( a p p r o x i m a t e l y  per p o l e ) n o r does i t i n c l u d e any h o s p i t a l e x p e n s e .  $100  - 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 r e 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 t h e H e a l t h S c i e n c e s C e n t r e ) have p r o d u c e d t e a c h i n g manuals which a r e g i v e n t o t h e 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 . Follow-up  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 .  T h e r e 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 public health nurses.  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 t h e o u t p a t i e n t c l i n i c a t t h e hospital.  In p r a c t i c e , however, t h i s c l i n i c i s seldom u s e d .  The  n u r s e 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 the p a t i e n t s t h e y have t r a i n e d .  intravenous contact  with  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 h e p h a r m a c i s t s .  T h e r e i s no a r r a n g e m e n t f o r s o c i a l  w o r k e r s 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 o u t o f hospital. 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 t h e 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 administer parenteral n u t r i t i o n i n the four hospitals involved.  Vancouver General  Hospital  S i n c e 1972, when t h e f i r s t HPN p a t i e n t was t a u g h t a t V a n c o u v e r G e n e r a l 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. p a t i e n t s f o r HPN t r a i n i n g i s a m e d i c a l intravenous  decision.  n u r s e c l i n i c i a n and a p h a r m a c i s t .  Selection of  P a t i e n t s a r e t a u g h t by an  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, d e p e n d i n g upon t h e p a t i e n t ' s l e a r n i n g a b i l i t y and t h e d e l i v e r y date o f t h e s u p p l i e s . A l t h o u g h t h e 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 n o t i n s t i t u t e d by t h e h o s p i t a l u n t i l 1979 and t h e t e a c h i n g manual was n o t p r e p a r e d  u n t i l 1983. P r i o r t o t h e manual's d e v e l o p m e n t , 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 zes t h e t e c h n i q u e s  and p r o v i d e s t h e p a t i e n t s w i t h a home  P a t i e n t s f r o m VGH u s u a l l y have i n t r a v e n o u s although  taught.  The manual  standardi-  reference.  access v i a a Broviac  catheter  a number o f p a t i e n t s have polytetrafluorethylene (PTFE) grafts o r  saphenous v e i n g r a f t s .  T h e s e g r a f t s c o n n e c t t h e femoral  a r t e r y t o t h e femoral  v e i n i n t h e 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 n e e d l e i n o r d e r t o a d m i n i s t e r parenteral  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 t u b e w h i l e saphenous v e i n g r a f t s use t h e p a t i e n t ' s own v e i n t o c o n n e c t with the 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 u s e an i n t r a v e n o u s  i t i s not possible t o run parenteral  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 t h e  p r e s s u r e e x e r t e d by t h e b l o o d i n t h e g r a f t . c a t h e t e r s t r a i n e d a t VGH a l s o u s e i n t r a v e n o u s The i n t r a v e n o u s standing o f parenteral  i n f u s i o n pump, a s  P a t i e n t s w i t h c e n t r a l venous i n f u s i o n pumps.  n u r s e 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 undern 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 s y s t e m , knowledge o f t h e  importance o f a s e p t i c technique  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 .  patients are taught the t e c h n i c a l s k i l l s necessary  t o perform the procedures,  o p e r a t i o n o f t h e 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, 1 9 8 3 ) .  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 t h e 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  Also,  required.  - 41 -  a) 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  A p h a r m a c i s t a t VGH i n s t r u c t s t h e 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 t h e 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 e l e m e n t s 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 a r e 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 the nurse.  The p a t i e n t i s g i v e n t h e t e l e p h o n e  and p h a r m a c i s t office.  numbers o f t h e p h y s i c i a n , n u r s e  t o c o n t a c t i n c a s e o f emergency.  Follow-up i s at the  The h o s p i t a l n u r s e 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  physician's  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 c h a n g e s . only personal  contact occurs i f the p a t i e n t i s readmitted  to hospital.  It i s i n t e r e s t i n g t o n o t e t h a t a s m a l l f o l l o w - u p s t u d y o f 3 HPN 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. observed  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 interviews.  The a u t h o r c o n c l u d e d  compounding  and p r o c e d u r e s  patients  These p a t i e n t s were  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  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  The  interviewed. techniques  as i n d i c a t e d by t h e  t h a t t h e 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 preparation  St. Paul's  ( L o u i e , 1983).  Hospital  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 t h a n any o t h e r i n approximately  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  n u r s e 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 n u t r i t i o n committee. clinician.  B.C.,  Teaching  Topics covered  who  a r e members o f t h e h o s p i t a l ' s  i s done s o l e l y by t h e i n t r a v e n o u s  nurse  i n c l u d e a d e s c r i p t i o n o f t h e c e n t r a l venous c a t h e t e r ,  - 43 -  aseptic technique,  assembly and use o f t h e IV equipment, c a r i n g f o r t h e  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 t h e p a r e n t e r a l n u t r i t i o n solutions. 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 r e n o t 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 t h e s o l u t i o n s  a r e r u n by g r a v i t y .  Patients are taught the parenteral n u t r i t i o n  procedures  from a manual w h i c h has been d e s i g n e d by t h e s t a f f f o r t h i s p u r p o s e . may t a k e t h i s manual home a s a r e f e r e n c e .  Patients  The manual i s s e t up i n a s t 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 t h e 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 occur.  T h e r e 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, s e x u a l 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 t h e 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 t h e s e once a t home on HPN.  P a t i e n t s a r e 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). Teaching  a t S t . P a u l ' s t a k e s 2 t o 6 weeks d e p e n d i n g on t h e p a t i e n t , w i t h  the a v e r a g e 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 t h e m o r n i n g 5  days each week, w i t h t h e p a t i e n t . evening  A f t e r one week o f i n s t r u c t i o n , a 1/2 h o u r  s e s s i o n i s added t o a l l o w t h e p a t i e n t s t o l e a r n t h e h o o k i n g - u p  procedures. hospital.  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 t h e However, as i n t h e 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  a r e 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  office.  - 44 -  U n i v e r s i t y of B r i t i s h Columbia Health Sciences Centre Hospital (UBC HSCH) Vancouver  The U n i v e r s i t y 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 patients.  P a t i e n t s from t h i s hospital do not receive supplies from the M i n i s t r y  of Health.  Instead, a l l s o l u t i o n s and supplies are provided by a private  company, Travacare.  Payment to Travacare i s arranged by the h o s p i t a l .  At  UBC Health Sciences Centre H o s p i t a l , the p a t i e n t ' s physician i s responsible for determining the s u i t a b i l i t y of a patient f o r home parenteral n u t r i t i o n and for the preparedness of the patient at discharge.  P a t i e n t s receive i n s t r u c t i o n from  the h o s p i t a 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. three departments have also prepared a patient teaching manual. of the manual for the patient are l i s t e d as f o l l o w s .  These  The objectives  The patient should:  1.  Understand the basic p r i n c i p l e s of n u t r i t i o n as i t r e l a t e s to parenteral n u t r i t i o n at home, i n c l u d i n g modes to deal with s o c i a l s i t u a t i o n s and food c r a v i n g s .  2.  Understand and demonstrate a l l steps necessary f o r admixture of s o l u t i o n s i n the home.  3.  Describe appropriate mechanisms f o r storage and disposal of equipment.  4.  Describe and demonstrate basic p r i n c i p l e s of asepsis as i t r e l a t e s to the care of the home parenteral n u t r i t i o n system.  5.  Describe each component of the HPN program and i t s function.  6.  Operate an i n f u s i o n pump and trouble-shoot any problem.  7.  Understand and demonstrate d a i l y monitoring procedures.  8.  Describe appropriate means of preventing complications of HPN.  related  - 45 -  9.  D e s c r i b e a p p r o p r i a t e management o f t h e p o t e n t i a l p r o b l e m s .  10.  D e s c r i b e s i g n s and symptoms o f t h e p r i 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 h e 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 Information Booklet, 1985).  Unlike the other 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 h e 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 a s s e s s m e n t i n c l u d e s a h i s t o r y o f t h e  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 . measurements a r e used t o d e t e r m i n e  nutritional status.  A l s o , body  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 the 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 , t h e d i e t i c i a n f o l l o w s t h e 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 o u t f o r d i n n e r and how t o make t h e 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 p r e - m i x e d s o l u t i o n s , they a r e r e q u i r e d o n l y t o add t h e necessary vitamins t o t h e i r s o l u t i o n s .  Teaching i s therefore s i m p l i f i e d i n  comparison with other h o s p i t a l s already  discussed.  The IV n u r s e c l i n i c i a n t e a c h e s t h e p a t i e n t how t o manage t h e d a i l y HPN r o u t i n e i n c l u d i n g monitoring o f weight, temperature  and c a t h e t e r , d r e s s i n g  c h a n g e s , 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 , t h e use o f t h e i n f u s i o n pump and d i s continuation of 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 , hypoglycemia  and d e f e c t i v e equipment a r e 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  b e s t 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 Follow-up care post-discharge  is clearly outlined.  how  occur.  Patients are i n s t r u c t e d  t o phone t h e 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 the area are i n s t r u c t e d to return to  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 b l o o d work. seen by members o f t h e TPN team.  UBC  At t h i s t i m e , t h e y w i l l a l s o be  The h o s p i t a l IV n u r s e c l i n i c i a n c o n t a c t s  the  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 a r r a n g e m e n t s 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 n u r s e 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 t h e 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 c o m m u n i c a t i n g 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 to the  B.C.  Children's  The B.C.  providers.  Hospital  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 t e e n a g e 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. important,  Because t h e need f o r HPN was  f e l t t o be so  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  established.  At p r e s e n t , t h e d e p a r t m e n t s o f m e d i c i n e ,  w o r k i n g t o p r o d u c e such a program.  was  n u r s i n g and pharmacy a r e  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  a p p r o v e d 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 t h e M i n i s t r y o f H e a l t h .  be  - 47 -  The p a t i e n t s , so f a r , have been trained to mix and administer the HPN solutions and care for t h e i r central venous catheters by an intravenous nurse c l i n i c i a n . The supplies and pre-mixed solutions have been provided by Travacare, KDS has provided the i n f u s i o n pumps, and the M i n i s t r y of Health has assumed the costs of HPN for these c h i l d r e n .  At present, the departments of d i e t e t i c s and social  work are not i n v o l v e d .  Follow-up of these patients has been at the hospital  where each patient has been seen by the nurse c l i n i c i a n and p h y s i c i a n . It i s of i n t e r e s t t h a t , to date, no c h i l d under the age of 16 has been placed on the program.  There a r e , however, a number of younger c h i l d r e n who  have been r e c e i v i n g parenteral n u t r i t i o n i n the hospital for long periods of time.  These patients may be considered f o r HPN in the f u t u r e .  M i n i s t r y of Health  It can be seen that the home parenteral n u t r i t i o n s i t u a t i o n i n B.C. i s , at present, fragmented with each hospital providing a d i f f e r e n t form of care for their patients.  In an e f f o r t to a l l e v i a t e 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 . P a u l ' s and C h i l d r e n ' s h o s p i t a l s , and KDS. The purpose of the committee i s :  1.  To provide input i n t o the care of c l i e n t s maintained at home.  2.  To a s s i s t KDS in maintaining a c o s t - e f f e c t i v e service through standardization of equipment and supplies and s e r v i c e s .  3.  To provide feedback to KDS from c l i e n t s on the TPN program regarding services and s u p p l i e s .  - 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.  This  committee i s composed o f t h e c h a i r m a n o f t h e 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  hospitals, the  V a n c o u v e r Bureau p h a r m a c i s t , a d i e t i c i a n , an IV n u r s e 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 p u r p o s e 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 t o t h e 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 t h e m a r k e t . the M e d i c a l  Advisory  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  Committee o f t h e 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 t h u s 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 supplies.  T h i s p o s s i b i l i t y would, o f course,  i n c r e a s e t h e 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 p r e - m i x e d " c o r e " s o l u t i o n s . same t i 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  At the  t h e 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 p r o b l e m s i n t h i s a r e a .  - 49 -  CHAPTER 4:  THE THESIS METHODOLOGY  The t y p e o f s t u d y 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 a r e a 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 p r o b l e m s 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 t h e l a c k o f any o b v i o u s  " c o n t r o l g r o u p " , a s w e l l a s t h e l a c k o f i n f o r m a t i o n a b o u t HPN i n B.C., a comparative  e v a l u a t i o n p e r se was n o t 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 c o m p a r i s o n (Robb, 1 9 8 3 ) . examines t h e m e d i c a l  This latter  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  trained t o s e l f administer parenteral n u t r i t i o n a t the University Hospital, U n i v e r s i t y o f W a s h i n g t o n , between 1972 a n d 1982.  Data  Sources  The d a t a s o u r c e s used f o r t h e p r e s e n t s t u d y 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 t h o s e used i n S e a t t l e t o a l l o w f o r c o m p a r i s o n o f results.  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  c o 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 w o r k e r s i n B.C. i n t h e 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 , nurses, pharmacists,  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 .  study  - 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 ,  Ministry  of Health and h o s p i t a l employees.  Method o f S t u d y  The study methods were a s f o l l o w s : 1.  The P a t i e n t  Questionnaire  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 the time o f d a t a c o l l e c t i o n ( O c t o b e r  n u t r i t i o n i n B.C. a t  1986), o r who had been on t h e  program a t any t i m e i n t h e 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 t h e patient questionnaire. contacted  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  d i r e c t l y by t h e r e s e a r c h e r .  were o b t a i n e d  Names o f w i l l i n g p a r t i c i p a n t s  from t h e 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  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 t h e r e s e a r c h e r questionnaire  people. and t h e  was m a i l e d o r d e l i v e r e d i n p e r s o n t o a l l o f t h e s e .  p a t i e n t s responded (87%).  20  One r e p l y was l o s t i n t h e mail f o r a n e t  response rate o f 83%.  2.  The H e a l t h P r o f e s s i o n a l  Questionnaire  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 t h e 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 t h e 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 .  Professionals included physicians,  nurses,  - 51 -  pharmacists,  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 w o r k e r s o r  p s y c h i a t r i s t s were i n c l u d e d b e c a u s e none a r e c u r r e n t l y i n v o l v e d w i t h HPN i n t h e 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 r e s p o n d e d 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 V a n c o u v e r General Hospital.  However, b e c a u s e t h e p a t i e n t s were n o t f o l l o w e d by t h e  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  incomplete.  As w e l l , t h e 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  Information  O t h e r 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, t h e d e v e l o p m e n t o f t h e HPN program i n B.C., and t h e e x t e n t t o which HPN has been  provided  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 w o r k i n g i n t h e f i e l d  today  or a s s o c i a t e d with i t i n the past.  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 t h e 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.  minimal s t a t i s t i c a l sample s i z e .  However, o n l y  a n a l y s i s o f t h e r e s u l t s was p e r f o r m e d b e c a u s e o f t h e small  - 52 -  CHAPTER 5:  PART 1:  RESULTS OF THE STUDY  THE PATIENT QUESTIONNAIRE  Results A.  Patient Characteristics  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 r e s p o n d e d , 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 p e r s o n 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 a v e r a g e d 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. male, 10 were f e m a l e .  Nine p a t i e n t s were  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 .  T h r e e p e r s o n s l i v e d a l o n e w h i l e t h e 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 l o w e r m a i n l a n d a r e a and 9 e l s e w h e r e i n the p r o v i n c e .  More  t h a n 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  p e r s o n 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 employable.  F o r the most p a r t , the p a t i e n t s were w e l l  educated.  A l l but one had c o m p l e t e d 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 d e g r e e .  R e s p o n d e n t s 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 d a t a later in this chapter.  - 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 . therapy, varied.  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  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 m a s s i v e s u r g e r y . Only one p e r s o n 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 p e r s o n s  fell  w i t h i n t h e i d e a l r a n g e , and 8 were 10% o r more below t h e 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  Characteristic  Age ( y e a r s ) Length o f t i m e on Program ( y e a r s ) No. o f I n f u s i o n s p e r week a. F o r d i s c u s s i o n , see page 75.  Seattle  9  Range  Mean  22-78  50.1  0.5-9.5  3.6  2-7  5.3  - 54 T a b l e 5-2.  Patient Characteristics  Characteristic  B • C. # of Pt.  Number o f p a t i e n t s Mai es  Sea t t l e a # of Pt.  %  19  %  42  9  47  14  33  10  53  28  67  Single  12  63  10  24  Married  5  26  24  57  Divorced  2  11  3  7  Widowed  0  0  5  12  Al one  3  16  12  29  Shared  16  84  29  69  0  0  1  2  10  53  9  47  Employed  4  21  5  12  Homemaker  3  16  4  10  Student  3  16  0  Unemployed  1  5  15  36  Physically Disabled  8  42  11  26  Retired  0  7  17  Females Marital  Status  Living Status  Extended C a r e F a c i l i t y Living Situation Lower M a i n l a n d O u t s i d e Lower M a i n l a n d Employment S t a t u s  - 55 T a b l e 5-2  (Continued)  Characteristic  B.C.  Seattle  # of Pt.  # of Pt.  F a m i l y Income Earned  11  58  Pension  9  47  Welfare/UIC  2  11  Other  1  5  Elementary School  1  5  High S c h o o l  6  32  11  58  1  5  11  58  Radiation Enteritis  2  11  Acute G.I. E p i s o d e  4  21  Other  1  5  Not I n d i c a t e d  1  5  1  5  10  53  10-20% Below  4  21  20-30% Below  2  11  More t h a n 30% Below  2  11  Education  Post High School T r a i n i n g U n i v e r s i t y Degree Diagnosis Crohn's D i s e a s e  Ideal Weight 10-40% Above I d e a l Range (+10% t o -10%)  a. F o r d i s c u s s i o n , see page 75.  9  - 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 d a t a 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. t h e s e p a t i e n t s was 69.3 y e a r s .  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  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 t h e mean number o f t i m e s 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 t h a n 7 days p e r 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 . c e n t r a l venous c a t h e t e r , T a b l e 5-3.  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 T h r e e p a t i e n t s had PTFE g r a f t s .  Most o f  t h e 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 Hospital. 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 t h e mean v a l u e 74.4 h o u r s .  M o s t 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 p e r HPN day ranged from 15 minutes 2 h o u r s , w i t h t h e a v e r a g e b e i n g 50 Compliance  to  minutes.  w i t h t h e program seemed v e r y good.  m i s s i n g more than one i n f u s i o n per week.  Only 2 p e r s o n s a d m i t t e d t o  One o t h e r d i d n o t r e s p o n d .  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 .  A l l but 2  - 57 T a b l e 5-3.  C h a r a c t e r i s t i c s o f HPN T h e r a p y  Characteri stic I.V.  Seattle # of Pt. %  B.C. # of Pt.  3  Access Central Graft  Catheter  42 0  100 0  0 0 42  0 0 100  90 11  42 0  100 0  42 42  17 13 7 3 2  41 31 17 7 5  16 3  84 16  5 12 1 1  26 63 5 5  6 4 9  32 21 47  1 6 6 6  5 32 32 32  17 2  8 8 0 2 1  Trained VGH St. Paul's UBC HSCH Children's HPN  Solutions Total Mix Core Not-Premixed  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 ( h o u r s p e r week) L e s s than 40 40-65 65-90 More than 90 R o u t i n e B l o o d Work Yes No Skipped  Infusions  Never 1-2 p e r Month 1 p e r Week More than 1 p e r Week No R e s p o n s e  a.  F o r d i s c u s s i o n , see page 76.  11 5  - 58 -  C.  Clinical  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 p e r p e r s o n f o r t h e y e a r p r i o r t o the d a t a c o l l e c t i o n , o r t h e 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 a d m i s s i o n s , w i t h t h e 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 . T h r e e 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 t h e y e a r . T o t a l h o s p i t a l i z e d days p e r p a t i e n t f o r t h e y e a r , ranged from 0 t o 64 days, w i t h a mean o f 11.7 d a y s , o r a p p r o x i m a t e l y 3% o f t h e 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 a p p e a r e d t o be r e l a t e d t o t h e 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 p r o b l e m s , m a i n l y i n f e c t i o n . t h e s e a d m i s s i o n s was 9.7  The a v e r a g e h o s p i t a l s t a y f o r  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 a v e r a g e 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 a v e r a g e l i f e span o f 15.1 months.  The r e a s o n f o r removal o f t h e c a t h e t e r i n o v e r h a l f o f t h e c a s e s was  i n f e c t i o n (Table 5-5). and t e r m i n a t i o n o f HPN  The n e x t most common c a u s e s o f removal were c l o t s ( 2 0 % ) , (16%).  Seven o f t h e 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 c o m p l a i n t s e x p e r i e n c e d by t h e 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 n e v e r . frequent  The number o f  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 t h e 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 t h e number o f p a t i e n t s who had f r e q u e n t , c o m p l a i n t s o n l y b e f o r e HPN, o n l y a f t e r b e g i n n i n g HPN, b e f o r e and a f t e r HPN.  and t h o s e who had c o m p l a i n t s both  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  urination while infusing.  T h i s , o f c o u r s e , was due t o t h e 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.  Range Hospital  Mean  Range  1.3  0-7  Seattle  b  Mean  Admissions  0-3  Total 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 Stay  1-30  10.6  1-60  12.1  1-30 4-20 1-30 4-20  9.7 11.6 9.7 11.4  1-27 1-60 1-60 4-21  11.7 12.9 14.0 8.6  (Days)  HPN r e l a t e d HPN u n r e l a t e d Catheter related Catheter unrelated L i f e o f Removed C a t h e t e r s  0.1-48 months  # o f Catheters per Pt. a. b.  15.1 mon.  21.8 mon.  3  1-6  2.1  1.6  1-21  2.4  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. F o r d i s c u s s i o n , s e e 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.  #  Infection  Seattle  N=25  N=29^  #  13  52  19  66  5  20  7  24  2  8  1  4  Unknown  1  4  2  7  T e r m i n a t i o n o f HPN  4  16  0  0  P t . w i t h No C o m p l a i n t s  7  44  20  Clots Positional/Physical  a. b. c.  Problem  N=16 N=42 F o r d i s c u s s i o n , s e e page 76.  3  b  48  - 60 -  T a b l e 5-6.  P h y s i o l o g i c a l Complaints B .C.  Complaint  Seattle  Frequent # of Pt % B e f o r e HPN (only)  # of Pt % A f t e r HPN (only)  # of Pt % Before & After  Infrequent o r Never  Never  %  %  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 Pain  0  0  6  32  2  11  58  40/52  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 & Feet S w e l 1 i ng  3  16  3  16  2  11  58  48  -  1  5  -  -  95  86  Shortness of Breath while Infusing Generalized Weakness  6  32  4  21  2  11  37  52  Episodes o f Nervousness  2  11  1  5  1  5  79  62  Frequent U r i n a t i o n while Infusing  -  -  12  63  -  -  37  45  5  3  16  3  16  63  71  Episodes of Dizziness when S t a n d i n g 1  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.  5  a  - 61 -  l i q u i d i n f u s e d during t h i s time.  Another frequent complaint reported 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 starting.  From t h i s r e s t r i c t e d d a t a , one c a n n o t 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 s t a t u s f o l l o w i n g the commencement o f t h e p a r e n t e r a l n u t r i t i o n .  nutritional  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 nervousness. Symptoms t h a t i n c r e a s e d most r e m a r k a b l y a f t e r s t a r t i n g HPN, 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  o t h e r than  i n the hands and f e e t , bone and j o i n t  p a i n , d r y 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 t h e 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, t h e 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 t a k e n by t h e 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 h y p o g l y c e m i a  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 g r a d u a l 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 t h e c o n c l u s i o n o f t h e i n f u s i o n can p r e v e n t t h i s (Ladefoged, 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 t h e 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 B.C.  Complaint  Frequent # of Pt. %  (N=19)  8  Seattle  I n f r e q u e n t o r Never # of Pt. %  0  Complained # of Pt.  (N =27) %  Diarrhea"  9  50  9  50  7  26  Nausea  7  37  12  63  10  37  Shortness o f Breath  0  0  19  100  3  11  Pounding  0  0  19  100  5  19  5  28  13  72  14  52  4  21  15  79  5  19  Unusual  Chest Taste  Abdominal  5  Cramps  a.  T h e s e symptoms a r e n o t 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 , s e e page 77.  - 63 -  factors.  F o r example, d i a r r h e a i s a common p r o b l e m c i t e d by t h e 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, t h e p r i m a r y c a u s e o f t h e  diarrhea i s l i k e l y not the f a t solutions, but rather the condition 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 oral i n g e s t i o n o f foods. (37%) and abdominal cramps ( 2 8 % ) a r e 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 . t a s t e ( 2 8 % ) i s , however, l i k e l y due t o t h e f a t e m u l s i o n .  Nausea  Unusual  Shortness o f breath  and p o u n d i n g c h e s t were n o t p r o b l e m s f o r t h i s group.  D.  Psychosocial  Effects  T a b l e 5-8 summarizes some o f t h e s o c i a l e f f e c t s e x p e r i e n c e d patients.  by t h e  Each p e r s o n 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 t h e d e g r e e 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 these r e s u l t s f o l l o w s :  N e a r l y 8 0 % 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 . t i o n during the night, although disturbance  M o s t o f t h i s was due t o f r e q u e n t  t h e r e were a l s o f o u r c o m p l a i n t s  urina-  o f sleep  due t o t h e t u b i n g , equipment n o i s e , o r t o w o r r y a b o u t equipment  malfunction. 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  r e s p o n d e n t s l i s t i n g i t . The r e a s o n f o r t h e i n t e r f e r e n c e was m a i n l y t h e 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 destination.  One p e r s o n , however, d i d m e n t i o n t h a t T r a v a c a r e  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 . much p r e p a r a t i o n  had a r r a n g e d  Some o t h e r s found t h a t t o o  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 t h e amount o f t r a v e l they c o u l d do by t h e number o f days they  - 64 -  T a b l e 5-8.  Interference with  Activity B.C.  Seattle"  In t e r f e r e n c e Activity  None # of Pt  Moderate  Severe  Pt. with Complaint Moderate or Severe  Pt. with Complaint  %  %  # of Pt  %  # of Pt  %  %  Sleep  4  21  6  32  9  47  79  53  Travel  2  11  11  58  6  32  90  50  63  3  16  4  21  37  19  Sex L i f e  12  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^  100  0  0  0  0  0  6  33  10  56  2  11  67  15  94  0  0  1  6  6  6  60  4  40  0  0  40  Marital  Relations  Family & S o c i a l Life c  Religious Acti v i t y Work  d  e  5  a  5  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  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 t i m e 33%, community f u n c t i o n s 29%.  g.  Family  h.  F o r d i s c u s s i o n , see page 78.  patients.  l i f e 5%, s o c i a l l i f e 43%.  17 5/439 14  -  - 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 . M o s t 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 .  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 t h e  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 and a l a c k o f time t o e s t a b l i s h sexual  relationships.  However,  about t h e c a t h e t e r ,  Two p e o p l e r e p o r t e d  that  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 f o u n d HPN i n t e r f e r e d w i t h exercise, b u t o n l y rated i t severe. of energy.  11%  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 o r l a c k  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 skiing or c u r l i n g .  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 ,  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 p r e HPN  t i m e s 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 t h e 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  a c t i v i t i e s , and t h e overwhelming  r e a s o n f o r t h i s a p p e a r e d 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 t y p e o f activity.  One p e r s o n f o u n d 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 n o t 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 "  instead.  O t h e r s f o u n d 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 n o t 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 t h e 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 f o u n d 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 . problem.  A g a i n , t h e time commitment t o HPN seemed t o be t h e major  Four p e o p l e found t h a t b e i n g u n a b l e 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 . a l l a f r a i d o f HPN t h e r a p y .  A n o t h e r r e p o r t e d t h a t h i s f r i e n d s were  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  discomfort.  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  p e 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 n o t a p p l y t o them because they were not involved in religious 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  reported  no i n t e r f e r e n c e . F o u r 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 c a u s e d 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 f o u n d t h a t an e a r l y morning  start  meant t h e 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 n o t 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  d a t a 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 s t a t u s p o s t HPN. HPN,  this  working  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  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  possible.  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 p e r s o n s showed no change i n employment s t a t u s w h i l e t h e 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 P r e and P o s t HPN Time  Occupation P o s t HPN  Occupation Pre HPN  1.  Dental A s s i s t a n t  FT  Unemployed  2.  Housewife/Mother  FT  Housewife/ Mother  3.  Secretary  FT  Unemployed  4.  Student/Disabled  PT  Handyman  5.  Sales  PT  Sales  6.  Student  7.  Homemaker  FT  Homemaker  8.  Bookkeeper  PT  Unemployed  -  P h y s i c a l l y Unable  9.  Optical Technician  FT  Unemployed  -  P h y s i c a l l y Unable  10.  Disabled  Unemployed  No  11.  Boi1ermaker/Welder  FT  Unemployed  -  12.  Student  FT  Student  13.  Di s a b l e d  14.  Student  15.  Disabled  16.  Professor  17.  a  Time  FT  P h y s i c a l l y Unable  No  -  L o o k i n g f o r Work  FT  +  Can w o r k / H e a l t h i e r  FT  +  Can w o r k / H e a l t h i e r  -  P h y s i c a l l y Unable  Unemployed FT  PT  Unemployed  No  P h y s i c a l l y Unable  No  P h y s i c a l l y Unable  Student  FT  No  Shipper  FT  +  FT  Professor  FT  No  Student  FT  Student  FT  No  18.  Clerk  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,  FT  Change  Reason  Pt. #  PT = P a r t Time  Can w o r k / H e a l t h i e r  - 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 t o work.  One  student  (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 t o work.  Two o t h e r p e o p l e (Pt.#8 & 1 9 ) , 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 ( P t . # 1 2 ) , s u b s t i t u t e d f u l l - t i m e s t u d y  with part-time. 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 t h e 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 s m a l l 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 t h e s o c i a l time meals p r o v i d e f a m i l y and friends.  Seven p e o p l e were not a b l e t o consume any f o o d by mouth.  Three of  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 that 4 of  t h e s e 7 were s t i l l  The o t h e r 3 p a t i e n t s removed  present at family mealtimes.  t h e m s e l v e s from t h a t s o c i a l  situation.  The HPN p a t i e n t s were q u e s t i o n e d a b o u t t h e i r family's and d i f f i c u l t y in accepting t h e HPN t h e r a p y . t h e i r f a m i l y had had d i f f i c u l t y .  friends'  Only 3 p e o p l e f o u n d t h a t i n i t i a l l y  T h e s e 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 e d i c a l 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 t h e 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 t h e n u t r i e n t solutions.  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  situation.  F o u r 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 f o u n d i t a  c o n t i n u a l problem.  T h r e e 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 u n a b l e t o u n d e r s t a n d  their  i n a b i l i t y t o e a t o r t h e l a c k o f t i m e t h e y 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  Characteristic  Yes # of Pt.  Ability to eat orally  %  No # of Pt.  %  12  63  7  37  3  16  16  84  9  47  10  53  14  74  5  26  8a  42  11  58  8  57  6  43  18  95  1  5  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  11  58  8  42  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  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  initially  O t h e r f a m i l y members' l i v e s changed Met o t h e r HPN p a t i e n t s F r i e n d s had d i f f i c u l t y  accepting  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 * 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 Specialist  doctor  Financial cost incurred  5  Family help Emotional  a.  4 difficulty initially, 4 difficulty continually  b.  N = 14  - 70  -  o t h e r hand, 3 p e o p l e m e n t i o n e d t h e p o s i t i v e way f r i e n d s had r e s p o n d e d . Nine o f t h e 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' l i v e s had changed because o f t h e i r HPN t h e r a p y .  T h r e e p e o p l e w r o t e t h a t o t h e r f a m i l y members took  on h o u s e k e e p i n g 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 .  T h r e e more p e o p l e s a i d t h a t f a m i l y members took time o u t 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 were r e a r r a n g e d  t o accommodate t h e p a t i e n t .  activities  One person r e p o r t e d t h a t t h e pump  noise i n t e r f e r e d with t h e sleep o f h i s spouse. P a t i e n t s were a l s o a s k e d how family members s p e c i f i c a l l y helped them. T h r e e r e s p o n d e d 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  support.  Fourteen  r e s p o n d e n t s had met other HPN patients.  Eight  continued  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 t h e r e l a t i o n s h i p was i m p o r t a n t  t o 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 p r o b l e m s o f both p h y s i c a l and e m o t i o n a l medical  n a t u r e s , knowing a p e r s o n who c o u l d r e l a t e t o t h e  p r o b l e m s a n d moral s u p p o r t .  I t i s i n t e r e s t i n g that i n recent years, a  number o f HPN p a t i e n t s i n t h e l o w e r 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 b u t one p a t i e n t i s seen by at least one health professional on a regular basis.  The p r o f e s s i o n a l n e a r l y a l w a y s seen i s t h e s p e c i a l i s t , b u t  a t times i t i s t h e general practitioner. c o n t a c t w i t h a nurse.  O n l y one p e r s o n r e p o r t e d  regular  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  a nurse and a pharmacist, r e s p e c t i v e l y . p h y s i c i a n s when p r o b l e m s w i t h HPN a r o s e .  with  A l l reported turning to t h e i r Seven people had a l s o c o n t a c t e d t h e  n u r s e i n some s i t u a t i o n s a n d one p e r s o n h a d c o n t a c t e d a  pharmacist.  - 71 -  E l e v e n o f t h e 19 p a t i e n t s r e p o r t e d t h a t HPN t h e r a p y had r e s u l t e d i n some financial cost. dollars.  F o r t h e most p a r t , t h e s e c o s t s were l e s s t h a n f i v e  hundred  T h i s money was u s u a l l y s p e n t 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 .  T h r e e 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 V a n c o u v e r t o v i s i t t h e i r s p e c i a l i s t .  One  p e r s o n 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 p e r s e . In t h e f i n a l p a r t o f t h e q u e s t i o n n a i r e , p a t i e n t s were a s k e d t o r a t e t h e e f f e c t s HPN h a d had on t h e i r body image, self-confidence, a n d overall life.  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 , a n d 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 r e r e c o r d e d on T a b l e 5-11.  F o u r p e o p l e f e l t HPN t h e r a p y had h a d 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 t h e 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 h e  n e g a t i v e e f f e c t t o t h e c a t h e t e r which t h e y p e r c e i v e d a s 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 n o t l o o k h e a l t h y .  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 a s p o s i t i v e .  On t h e o t h e r 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 a n d an improved r e l a t i o n s h i p w i t h t h e f a m i l y . T h e mean s c o r e f o r t h e 18 p e o p l e who r e s p o n d e d 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 t h e 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 t h a n 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 " a n d t h a t s u c c e e d i n g i n managing t h e 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 p e r s o n , b e i n g a b l e t o go back t o work once on HPN c a u s e d t h e 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.) Positive  Effect  Body Image Self  Confidence  Overall  a. b. c.  3  5  %  # of Pt.  %  # of Pt.  %  6  33  4  22  8  44  3.9  9  50  8  44  1  6  3.0  13  68  2  11  4  21  2.4  (Seattle)  Positive  Image  Overall  d.  Mean S c o r e  # of Pt.  E f f e c t s o f HPN  Effect  a. b. c.  Negative  c  N = 18 N = 19 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.  Self  3  No E f f e c t  5  3  0  No E f f e c t  Negative  Mean S c o r e  # of Pt.  %  # of Pt.  %  21  55  9  24  8  21  3.5  23  64  6  17  7  19  2.7  • # of Pt.  0  %  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. N = 36 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 . 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 n o t 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  r a n k e d t h e 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 p e r s o n d e s c r i b e d t h e f e a r o f i n f e c t i o n as t h e s o u r c e o f t h e 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 t h e 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 t h e 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 e m p h a t i c 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 w r o t e t h e y 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 t h e 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  n e g a t i v e l y , s a i d t h e y were p h y s i c a l l y unwell on t h e t h e r a p y .  overall 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 and t h a t t h i s had n o t been t h e c a s e .  therapy  One o t h e r p e r s o n was r e s e n t f u l o f t h e  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 t h e S e a t t l e S t u d y  As d e s c r i b e d e a r l i e r , t h e 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 c o m p a r i s o n w i t h t h e 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 s t u d y done i n S e a t t l e (Robb, 1 9 8 3 ) .  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 s t u d y 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 t h e 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 to the n e a r e s t percent.)  - 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 t h 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 i n 1970. The t e a c h i n g program was i n i t i a t e d and c o o r d i n a t e d t h r o u g h t h e U n i v e r s i t y H o s p i t a l pharmacy a n d , by 1985, had i n v o l v e d more t h a n 200 p a t i e n t s . Patient selection  i s b a s e d on i n p u t from an HPN team  comprising  p h y s i c i a n s , a s o c i a l w o r k e r , a d i e t i c i a n , and a p h a r m a c i s t .  Vascular access i s  v i a c e n t r a l venous c a t h e t e r .  p h a r m a c i s t and  T e a c h i n g i s done by a c l i n i c a l  c o v e r s a r e a s common t o t h e o t h e r HPN p r o g r a m s .  I t i s b a s e d on a s t e p - b y - s t e p  manual which p a t i e n t s c a n take home f o r r e f e r e n c e . completely  A l l p a t i e n t s a r e taught t o  mix t h e i r own HPN s o l u t i o n s and t o r u n s o l u t i o n s v i a an  i n f u s i o n pump. Follow-up  Co-ordinator  intravenous  S u p p l i e s a r e d e l i v e r e d from t h e h o s p i t a l o r Travacare. i s well organized  and managed by t h e Home P a t i e n t C a r e  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 discharge  and then once p e r 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. operated  by t h e h o s p i t a l .  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 Here they a r e seen by t h e HPN p h y s i c i a n s ,  clinic clinical  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 w o r k e r i s a v a i l a b l e t o h e l p w i t h p r o b l e m s i f needed. HPN t e c h n i q u e s ,  psychosocial  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  n o t i f i c a t i o n o f s u 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 p e r 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 , University of Washington).  - 75 -  Data f o r t h e study were c o l l e c t e d i n A p r i l 1982. T h e 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 r e s p o n d e d .  A l l r e s p o n d e n t s had been a c t i v e i n t h e  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 Patient Populations  T a b l e s 5-1 a n d 5-2 show t h e c o m p a r a t i v e c h a r a c t e r i s t i c s of the patient populations  i n t h e B.C. a n d S e a t t l e g r o u p s .  I t c a n be seen t h a t t h e 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 a v e r a g e than t h e B.C. group w i t h t h e mean age b e i n g 50.1 a n d 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. T h e 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 t h e 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 f e 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 t h e p o p u l a t i o n i s m a r r i e d , b u t 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 a s compared t o 2 9 % o f p a t i e n t s i n t h e S e a t t l e group.  Over h a l f o f t h e  B.C. p o p u l a t i o n i s employed a s wage e a r n e r s , s t u d e n t s o r homemakers, and 2 1 % o f t h e s e p e o p l e a r e wage e a r n e r s .  In t h e S e a t t l e p o p u l a t i o n , o n l y 2 2 % a r e 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 . noted i n t h e study t h a t j u s t 25% o f t h e employable 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 .  However, i t was  people ( i e . not r e t i r e d , The r e a s o n f o r t h e unemploy-  ment i n 8 0 % o f t h i s group was t h e 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 coverage.  T h e r e i s a l s o marked d i f f e r e n c e i n p e r c e n t a g e o f p e o p l e  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 p e o p l e c o n s i d e r t h e m s e l v e s s o . However, i f t h e r e t i r e d group i s added t o t h e d i s a b l e d , t h e r e s u l t i s 4 3 % o f p e o p l e n o t 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 t y p e o f t h e r a p y r e c e i v e d by t h e 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 p r e - m i x e d .  A l l B.C. p a t i e n t s  r e c e i v e d f a t emulsions as part o f t h e i r weekly parenteral  nutrition infusions,  o n l y 64% o f t h e S e a t t l e group d i d s o . The mean number o f i n f u s i o n s p e r 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 t h e program was 3.7 and 3.6 y e a r s p e r  patient.  C.  Comparison o f R e s u l t s  Clinical  data  f o r t h e 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 a p p e a r v e 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 p e r 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 patients, respectively. stays appear s i m i l a r .  Likewise,  t h e 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  C a t h e t e r l i f e was l o n g e r on a v e r a g e f o r t h e S e a t t l e group  (22 months v s . 15 m o n t h s ) .  However, t h e 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 b e c a u s e 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 required  therapy.  Data showing r e a s o n s f o r c a t h e t e r r e m o v a l , 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 g r o u p s . Physiological complaints  were, on t h e whole, l e s s common i n t h e B.C.  group, T a b l e 5-6, w i t h t h e e x c e p 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 g e n e r a l i z e d weakness, f r e q u e n t  urination  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 -  frequently.  F u r t h e r c o m p a r i s o n w i t h o u t more data on t h e p a t i e n t s ' p r i m a r y  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 n o t p o s s i b l e . Physiological complaints  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 t h e 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 reasons f o r the d i f f e r e n c e are uncertain, i t  i s i n t e r e s t i n g b e c a u s e Robb r e p o r t e d t h a t t h e o n l y s i g n i f i c a n t p a t i e n t t e r i s t i c useful i n determining  HPN outcomes was t h e c o m p l a i n t  charac-  of diarrhea.  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 n o t ) 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 i n t e r f e r e n c e s t h a n t h e 19 p a t i e n t s who d i d n o t have c o m p l a i n t s (Robb, 1983).  and p s y c h o l o g i c a l of diarrhea  In B.C., t h i s r e l a t i o n s h i p a p p e a r s 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 t h a n 5 f r e q u e n t physiological complaints.  O n l y 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 complaints  (Table 5-13).  The p o s s i b l e  complaints  c o n s i d e r e d were t h e 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 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  Frequent Diarrhea  >5  <5  Yes  5  4  No  3  6  8  10  (Patients)  - 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 p r o b l e m .  Further  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 w h e t h e r t h e 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 p r o b l e m s w i t h t h e p a r e n t e r a l n u t r i t i o n therapy  i t s e l f , or unrelated to either.  I t s h o u l d a l s o be n o t e d t h a t due t o t h e small numbers i n t h e B.C. 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 n o t p e r f o r m e d .  study,  However, t h e data a r e  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 appropriate. The s e c o n d p a r t o f t h e 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 complaining  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 n o t have d i a r r h e a ) , does n o t a p p e a r t o h o l d t r u e i n B.C. 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.  In t h e S e a t t l e  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. index score". were:  The a g g r e g a t e s c o r e was l a b e l l e d t h e " p s y c h o s o c i a l  interference  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  considered  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 , 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 mean b e i n g 4.2.  appetite  The range o f s c o r e s was 0 t o 12 w i t h  In B.C., a s l i g h t l y d i f f e r e n t i n d e x s c o r e was used.  p o s s i b l e range was 0 t o 18.  The  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 c a u s e d a m o d e r a t e 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 severe.  The a g g r e g a t e s c o r e was t h e " p s y c h o s o c i a l  i f t h e i n t e r f e r e n c e was  i n t e r f e r e n c e index  score".  - 79 -  The range o f i n d e x 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 i n d e x s c o r e s used between t h e two s t u d i e s , no attempt was made t o d i r e c t l y compare them. respondents  complained  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 a v e r a g e , o f i n t e r f e r e n c e w i t h 50% o f t h e 9 a c t i v i t i e s  while S e a t t l e respondents  complained  B.C.  considered,  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  activities. 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 t h e p s y c h o s o c i a l  inter-  f e r e n c e i n d e x s c o r e and t h e r e s u l t s a r e shown i n T a b l e 5-14.  T a b l e 5-14. (Patients)"  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 S c o r e  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  Frequent Diarrhea  >5  <5  Yes  3  6  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 i n d e x s c o r e s g r e a t e r than 5, w h i l e o f t h e 9 p a t i e n t s who d i d n o t so c o m p l a i n o f d i a r r h e a , 4 (44%) had h i g h i n d e x 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  that  t h e p r e s e n c e o f d i a r r h e a does n o t seem t o be p r e d i c t i v e o f 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 score, u n l i k e the r e l a t i o n s h i p suggested 1983).  by Robb (Robb,  - 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 3 7 % and abdominal  cramps f o r a p p r o x i m a t e l y 2 0 % o f both g r o u p s .  Shortness o f breath,  pounding c h e s t and unusual t a s t e were r e p o r t e d a s 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 t h e 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 a c t i 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 , t h e  S e a t t l e q u e s t i o n n a i r e d i d n o t 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 a s 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 s t u d y w i t h moderate and s e 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 c o m p a r i s o n 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 t h e  B.C. s t u d y 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 t h e 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 Seattle.  T h e r e a s o n f o r t h i s d i f f e r e n c e i s n o t 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 a n d a r e a p p a r e n t l y g i v e n more psychosocial support.  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 c o m p a r i s o n  o f t h e two g r o u p s . 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.,  people  were asked t o r e p o r t e f f e c t s on body image, self-confidence a s 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 y o u 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 b o t h 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  response.  O v e r a l l e f f e c t s were good i n both g r o u p s .  On t h e 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, and  3.9  3.0. Thus, t o conclude the comparison,  i t w o u l d 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 n o t e n t i r e l y  supported  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 t h e 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 p a r a m e t e r s c o n s i d e r e d were t h e number o f p h y s i o l o g i c a l symptoms, t h e 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 , t h e 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 t h e 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 g r o u p s , t h o s e w i t h 5 o r 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 of 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 n o t 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 p e r s o n l i v e d a l o n e o r 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 cal  problems.  Age:  When t h e d a t a were examined i n r e l a t i o n t o age, i t a p p e a r e d 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 w e i g h t 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 p r o b l e m s .  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 ) c o m p l a i n e d  o f a h i 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 t h e 9 who were n o t w i t h i n t h e i d e a l range so i n d i c a t e d (Table 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 . I d e a l W e i g h 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  Diagnosis:  >5  <5  Yes  6  4  10  No  2  7  9  8  11  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 t h e 11 C r o h n ' 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 p r o b l e m s (>5), b u t 86% (6 p a t i e n t s ) o f t h e 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 problems. size.  such  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 h e small sample  - 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  Time on HPN:  >5  <5  Yes  1  10  11  No  6  1  7  7  11  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 t o 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  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 60% (6 p a t i e n t s ) o f t h e 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 w h e t h e r t h i s was due t o m o d i f i c a t i o n o f t h e 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 t h e 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 v s . Time on HPN Number o f F r e q u e n t P h y s i o l o g i c a l  Time on HPN  >1  yr.  <1 y r .  Time R e q u i r e d f o r HPN:  >5  <5  2  7  6  4  8  11  (Patients)  Symptoms  P a t i e n t s were d i v i d e d i n t o 2 groups d e p e n d i n g on t h e  number o f hours p e r 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 solutions.  nutrition  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 t h a n 80 h o u r s .  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 t h e s e 8,  Of t h e 11 p e r s o n s  whose time commitment was l e s s t h a n 80 hours p e r week, o n l y 27% (3 p a t i e n t s ) r e p o r t e d more t h a n 5 p h y s i o l o g i c a l symptoms ( T a b l e 5 - 1 9 ) .  T a b l e 5-19. (PatientsT  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  Number o f F r e q u e n t P h y s i o l o g i c a l  Hours f o r HPN p e r week  >5  <5  >80 h r .  5  3  <80 h r .  3  8  8  11  Symptoms  - 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  p e r week a l l r a n 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 p e r 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 r a n 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 orally.  G i v e n t h i s a s s u m p t i o n , i t f o l l o w s t h a t t h e f o r m e r 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 p r o b l e m s , both due t o t h e i r p r i m a r y d i s e a s e and t o t h e 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 l o w e r m a i n l a n d a r e a o f t h e p r o v i n c e seemed t o e x p e r i e n c e fewer  problems.  O n l y 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 t h e 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 t h e 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  Lower Mainland  >5  <5  Yes  2  8  No  6  3  8  11  Symptoms  -  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 i n t h e lower m a i n l a n d ,  patients living  having e a s i e r access to health 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 t h e lower area.  mainland  However, f u r t h e r i n v e s t i g a t i o n w o u l d be r e q u i r e d t o c o n f i r m t h i s .  Pyschosocial 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 p r o b l e m s 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 or 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 n o t  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 i n d e x 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 i n d e x s c o r e was to 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,  assigned  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 of patient 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 n o t 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 score.  However, as w i t h t h e 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 ;  l e n g t h o f time on HPN,  and the number o f hours d e v o t e d t o HPN,  d i d appear to  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 a p p e a r e d 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.  age,  - 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 S c o r e v s . 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 Interference >5  Less Interference <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 4 0 % 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 pronounc e d 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 - 1 5 ) . 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 t h e program l e s s than one y e a r ( T a b l e 5 - 2 2 ) .  These r e s u l t s a r e very s i m i l a r t o those 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 S c o r e 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 More Interference >5  Time on HPN  Less Interference <5  >1 y r .  2  7  9  <1 y r .  5  5  10  7  12  T h i s can p e r h a p s be a t t r i b u t e d t o t h e a d j u s t m e n t d e c r i b e d i n C h a p t e r 2.  p a t i e n t s make t o HPN as  However, b e f o r e t h i s c o n c l u s i o n c a n 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 e n s u r e t h a t t h e 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 n o t 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 c a u s e d a g r e a t d e a l o f i n t e r f e r e n c e d i d n o t 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 a n 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 s p e n t more h o u r s 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 s p e n t more than 80 h o u r s p e r week i n  t h 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 spent 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 t h o s e c o m p a r i n g 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. (Patients)"  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 . Time R e q u i r e d '  f o r HPN  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  Hours f o r HPN p e r week  Occupation:  More Interference >5  Less Interference <5  >80 h r .  4  4  <80 h r .  3  8  7  12  P e o p l e who were employed had l o w e r i n t e r f e r e n c e s c o r e s than  those  who were n o t ( T a b l e 5 - 2 4 ) , 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 a p p e a r r e l a t e d t o t h e number o f p h y s i o l o g i c a l symptoms c o m p l a i n e d  of.  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 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.  Of the 10 scores  It i s also  o f i n t e r e s t t h a t o f t h e 10 employed, o n l y 30% s p e n t more than 80 hours w i t h functions.  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  h o u r s p e r 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 .  HPN 80  T h i s d a t a would t h u s  a p p e a r 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 h o u r s per week (11.4 h o u r s p e r day on a v e r a g e ) p r e p a r i n g and a d m i n i s t e r i n g HPN,  a r e more l i k e l y  to 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  score.  - 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 S c o r e v s . O c c u p a t i o n  (Patients)  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  More Interference >5  Less Interference <5  Yes  2  8  10  No  5  4  9  7  12  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 w i t h 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 t h e 7 - p o i n t s c a l e . 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 . body image v s . i n d e x  T h i s t r e n d was n o t seen  T a b l e 5-25 shows p a t i e n t r a t i n g o f  score.  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  >4 (No E f f e c t or Negative) <4 (Positive)  with  More Interference >5  Less Interference <5  6  6  0  6  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 o r equal t o 4 on t h e 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  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 S c o r e vs HPN's E f f e c t on Self-Confidence (Patients) Psychosocial,Interference  HPN's E f f e c t on Self Confidence  score.  >4 (No E f f e c t or Negative) <4 (Positive)  Index S c o r e  More Interference >5  Less Interference <5  4  5  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 h i g h  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 l o w e r r a t i n g s ( i e . more p o s i t i v e ) of self-confidence.  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 i n d e x  score.  - 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 S c o r e vs HPN's E f f e c t O v e r a l l (Patients) 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 Effect Overal1  >4 (No E f f e c t or Negative) <4 (Positive)  More Interference >5  Less Interference <5  5  1  2  11  7  12  83% (5 p a t i e n t s ) o f t h e 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 h i g h i n d e x s c o r e , compared w i t h 15% (2 p a t i e n t s ) o f t h e 13 who r a t e d t h e 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 n o t a s s o c i a t e d w i t h age, s e x , 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 w e e k l y time r e q u i r e d f o r HPN, employment s t a t u s o r d i a g n o s i s . residence.  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  90% o f p a t i e n t s l i v i n g i n t h e l o w e r 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 areas o f the province.  The r e 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 t h e 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, s e x , attainment  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:  L e n g t h 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  rating  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  >4 (No E f f e c t or Negative)  <4 (Positive)  > 1y r .  3  6  9  < 1yr.  6  3  9  9  9  This f i n d i n g i s p r e d i c t a b l e given the opinion expressed  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 s e n s e o f a c c o m p l i s h m e n t (see p . 7 1 ) . t i o n remaining Occupation:  A g a i n , however, i t i s n e c e s s a r y  t o ensure that the p a t i e n t  popula-  a f t e r one y e a r does n o t b i a s t h i s c o n c l u s 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 t h e 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 t h o s 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  (Patients)  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 or Negative)  <4 (Positive)  Yes  3  7  10  No  6  2  8  9  9  A g 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 . 7 1 ) . 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 s p e n t l e s s than 80  h o u r s 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 s p e n t  E.  longer.  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 t h e 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 t h o s 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, s e x , a t t a i n m e n t  o f ideal weight, marital  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 n o t a p p e a r a s s o c i a t e d .  B e i n g employed, however,  - 96 -  seemed t o 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 >4 (No E f f e c t or Negative)  Employed  <4 (Positive)  Yes  2  8  10  No  4  5  9  6  13  As e x p e c t e d , p e r s o n s 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 a p p e a r 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 p e r week d e v o t e d 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 t h e 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 , o r spend  more than 80 h o u r s p e r 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 i n d e x s c o r e .  Also,  - 97 -  p a t i e n t s who  have been on HPN  h o u r s p e r week w i t h HPN P e r s o n s who  l o n g e r than one y e a r o r who  spend l e s s than  80  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 .  a r e employed a p p e a r 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 l o w e r m a i n l a n d a r e a o f the p r o v i n c e  reported  f e w e r p h y s i o l o g i c a l p r o b l e m s , and r a t e d HPN's e f f e c t on body image more negatively.  Whether t h e s e r e s u l t s a r e s i m p l y t r e n d s o r a r e  s i g n i f i c a n t was  statistically  not d e t e r m i n e d due t o the s m a l l numbers o f p a t i e n t s i n each  group.  PART 2:  THE HEALTH PROFESSIONAL QUESTIONNAIRE  Results  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 w o r k i n g w i t h HPN  p a t i e n t s i n B.C.  s p e c i a l i s t physicians, 5 pharmacists,  The 17 r e s p o n d e n t s i n c l u d e d 4  7 n u r s e s , and 1 d i e t i c i a n .  and one n u r s e f r o m the above l i s t were m a i n l y HPN  s e r v i c e i n B.C.  Two  with Vancouver General  One  physician  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  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 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 w i t h  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 a s k e d f o r o p i n i o n s on a number o f t o p i c s and results follow.  the  the  - 98  A.  Medical  -  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 n o t an i m p o r t a n t determining  criterion for  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 t o t h o 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  g e n e r a l l y a g r e e d upon i n t h e l i t e r a t u r e w i t h t h e e x c e p t i o n and p r e - o p e r a t i v e adjunct therapy  therapy  of cancer  patients,  ( s e e p . 5 ) . 50% o f t h e group f e l t t h a t HPN as an  f o r c a n c e r p a t i e n t s was n o t a p p r o p r i a t e  not s u i t a b l e therapy  were t h o s e  f o r pre-operative  HPN  condition precluded  HPN  patients.  The p r o f e s s i o n a l s were a s k e d i f any o t h e r medical f o r p a t i e n t s who would o t h e r w i s e  and 64% c o n s i d e r e d  meet t h e a d m i s s i o n  criteria.  Psychiatric  d i s e a s e was n o t f e l t t o be a c o m p l e t e c o n t r a - i n d i c a t i o n i f a d e q u a t e 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 , physical co-ordination  difficulties  were n o t 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 t h e p a t i e n t was available. severe.  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 p r o b l e m , e s p e c i a l l y i f  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  HPN t h e r a p y .  s e n i l i t y a contra-indication to  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 d r u g abuse and  severe v i s u a l impairment. HPN was, f o r t h e 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 p e r week and t h e r a p y expected t o continue  a t l e a s t 3 months.  was  - 99 -  B.  The Home S i t u a t i o n f o r HPN  Patients  H e a l t h p r o f e s s i o n a l s were a s k e d 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 potential candidate  f o r HPN.  any  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 was  not n e c e s s a r y .  o t h e r s was  desirable.  Thus, no one t h o u g h t t h a t a c c e p t a n c e by the  Physical assistance by f a m i l y members o r s i g n i f i c a n t  also considered  important.  e s s e n t i a l and 71% as d e s i r a b l e . was  e s p e c i a l l y important  times of i l l n e s s .  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  A number o f p e o p l e commented t h a t  assistance  f o r the very y o u n g , the o l d , the h a n d i c a p p e d , and  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  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 possible.  family  No one s t a t e d i t was  at could  perhaps  not p o s s i b l e .  R e s p o n d e n t s were a l s o a s k e d 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  candidate.  These requirements i n c l u d e d clean water,  e l e c t r i c i t y , c l e a n work s p a c e , a r e f r i g e r a t o r , s t o r a g e s p a c e 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.  Patient Characteristics  R e s p o n d e n t s were r e q u e s t e d intelligence and motivation.  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 , 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  a v e r a g e 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  a v e r a g e 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 p e o p l e )  c i t i n g h i g h m o t i v a t i o n as a r e q u i r e m e n t .  Only 4 p e 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 t h o u g h t m o t i v a t i o n was n o t 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 h e t y p 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 t h e r e 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 i n the province, w h i l e 12% t h o u g h t 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 a s k e d what t h e minimum standard f o r provided solutions s h o u l d be, 47% (8 p e o p l e ) r e s p o n d e d 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 p e 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 a d e q u a t e and 3 p e o p l e t h a t t h e 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 t h e 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 o u t 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 t h e p a t i e n t s ' home was t h o u g h t t o  be e s s e n t i a l by 4 1 % (7 p e 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 d e p e n d i n g on s t o r a g e s p a c e .  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 r e 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 h e 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 r e s p o n s e t o s o l u t i o n  c h a n g e s , 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. T h r e e p e o p l e t h o u g h t 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 p e r s o n s u g g e s t i n g t h a t t h i s would be l e s s expensive.  A n o t h e r 3 p e o p l e t h o u g h t 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 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 a s l o n g a s i t was w e l l o r g a n i z e d ,  matter  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 . Follow-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 .  R e s p o n d e n t s 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.  T a b l e 5-31.  R e s u l t s are l i s t e d i n Table  Follow-up  5-31.  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 Professional  Yes # of Pr.  Home V i s i t s  %  No # of Pr.  %  Yes # of Pr.  %  No # of Pr.  %  Specialist Physician  16  94  1  6  0  0  17  100  General Practitioner  10  62  6  38  0  0  17  100  Nurse  16  94  1  6  14  82  3  18  Pharmacist  12  71  5  29  7  41  10  59  Dietician  4  24  13  76  -  -  -  -  S o c i a l Worker  2  12  15  88  11  65  6  35  Nearly a l l respondents specialist physician  a g r e e d 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  and a n u r s e .  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 g e 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 w o r k e r t o be i n v o l v e d .  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  - 102 -  Health p r o f e s s i o n a l s were requested to i n d i c a t e whether home v i s i t s e i t h e r pre or post-discharge, were r e q u i r e d .  Results also appear i n Table 5-31.  It was agreed that physicians ( s p e c i a l i s t s or general p r a c t i t i o n e r s ) 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 p a t i e n t ' s home. their role.  S i x of 7 nurses surveyed, considered t h i s  G e n e r a l l y , respondents f e l t that the v i s i t should take place pre-  discharge and e a r l y i n the post-discharge p e r i o d . was need for regular home v i s i t s by the nurse.  Only 3 people thought  there  Seven respondents stated that a  pharmacist should make a home v i s i t with 4 of the 5 pharmacists surveyed considering t h i s important. necessary.  Only 2 of these thought more than one v i s i t was  A v i s i t by the s o c i a l worker was f e l t to be required by 65%.  The  timing of s o c i a 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 follow-up v i s i t s to occur.  This l o c a t i o n was preferred  over the s p e c i a l i s t p h y s i c i a n ' s or general p r a c t i t i o n e r ' s o f f i c e .  When asked  how t h i s arrangement would a f f e c t patients l i v i n g outside the lower mainland or V i c t o r i a areas, a v a r i e t y of responses were given.  Nevertheless, there was  general agreement that patients must be seen r e g u l a r l y and t h i s could require patients to make t r i p s to the large centers i n order to see t h e i r s p e c i a l i s t . It was also a common comment that good communications between the l o c a l health professionals c a r i n g f o r the HPN p a t i e n t and those in the large centers would be particularly  important,  the p r o f e s s i o n a l s .  as also would communications between the patients and  - 103 -  For emergent p r o b l e m s , i t was a g e n e r a l c o n s e n s u s t h a t the c o n t a c t 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  profes-  u s u a l l y i t would be the  s p e c i a l i s t or nurse.  E.  P a t i e n t S e l e c t i o n and  Training  Patient selection-was c o n s i d e r e d t o be t h e r e s p o n s i b i l i t y o f t h e  p h y s i c i a n and n u r s e by 100% o f the r e s p o n d e n t s .  More t h a n 50% f e l t t h a t a t  t i m e s 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 w o r k e r , p s y c h i a t r i s t o r  psychologist  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 t r a i n i n g s h o u l d take p l a c e o n l y a t designated  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 n u r s e  should 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 . t r a i n i n g was c o n s i d e r e d ment by 53%. training. HPN  necessary  Pharmacist involvement in  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  involve-  Only 2 p e o p l e t h o u g h t 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 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  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.  T h e r e 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 and u n d e r s t a n d i n g  of p o t e n t i a l problems.  Also, several professionals  techniques, considered  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 therapy,  a s 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 t h o u g h t 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 t o 2 weeks would s u f f i c e . T r a i n i n g a back-up p e r s o n i n HPN p r o c e d u r e s was c o n s i d e r e d 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  d e s i r a b l e by 76%  i t essential referred to  - 104 -  s i t u a t i o n s where HPN  was a t h e r a p y  C o n t a c t w i t h o t h e r HPN  for children.  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  people,  e s s e n t i a l by one p e r s o n and not r e q u i r e d by a n o t h e r . When a s k e d 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 m a i n t e n a n c e o f  q u a l i t y care, consistency of care, maintenance of p a t i e n t confidence  with  health  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.  Current S i t u a t i o n in  B.C.  R e s p o n d e n t s 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 a s k e d t o r a t e the c u r r e n t HPN  T a b l e 5-32.  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  R a t i n g o f the C u r r e n t HPN  Attribute  Good # o f Pr.  5-32.  S i t u a t i o n i n B.C. %  Fair # of Pr.  %  Poor # o f Pr.  %  6  40  8  53  1  7  Training  12  71  4  24  1  6  Follow-Up  2  12  12  71  3  18  1  7  10  67  4  27  Patient Selection  Psychosocial  3  Support  3  Highly  Acceptable  Not  Acceptable  Degree o f S o l u t i o n Pre-Mixing  4  24  9  53  4  Delivery  7  41  9  53  1  Acceptable  24 6  - 105 -  T a b l e 5-32.  R a t i n g o f t h e C u r r e n t HPN S i t u a t i o n i n B.C.  P a t i e n t Need f o r HPN  Always Met  Usually  2  9  12 Low  Complication Rate (Catheter Related)  15  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  Incidence of Psychosocial Problems^  B u r e a u c r a t i c and Administrative Requi rements a. b. c. d.  Met 53  Seldom Met 6  35 High  Acceptable  4  29  10  71  0  0  4  33  8  67  0  0  2  18  9  82  0  0  Little  Attribute  (Cont'd.)  Difficulty  # of Pr.  %  1  6  Some  Difficulty  # of Pr.  12  %  71  G r e a t Deal o f Difficulty # of Pr. %  4  24  N=15 N=14 N=12 N=ll  Patient selection was r a t e d good by 40% (6 p e o p l e ) , f a i r by 53%, poor by 7%.  and  The p o o r 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 h e 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 . f a i r , a n d 18% r a t e d i t p o o r . t o be good.  7 1 % (12 p r o f e s s i o n a l s ) f o u n d i t  Only 12% (2 p e o p l e ) c o n s i d e r e d  patient  follow-up  Some o f t h e 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  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 ,  follow-up  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 a n d t h a t o u t s i d e o f t h e 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 lacking. 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 6 7 % (10 o f 15 r e s p o n d e n t s ) r a t i n g i t a s f a i r , 2 7 % a s p o o r , and o n l y 7% (1 p e r s o n ) 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 t y p e o f  h e l p b u t r e s o u r c e s were u n a v a i l a b l e .  A n o t h e r p e r s o n 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 t h e p a t i e n t s p e c i f i c a l l y t r i e d to access psychosocial  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 24%.  by 53% and h i g h l y a c c e p t a b l e by  P r o f e s s i o n a l s who f o u n d t h e 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 t o o much t i m e d o i n g s o , r i s k i n f e c t i o n , and t h a t t h e 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  occurs".  A n o t h e r p r o f e s s i o n a l r e f e r r e d t o t h e p a p e r 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 t h e 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 h o u g h t t o be s a t i s f a c t o r y w i t h 4 1 % (7 p e o p l e ) r a t i n g i t a s h i g h l y a c c e p t a b l e , and o n l y 1 p e r s o n r a t i n g i t n o t a c c e p t a b l e .  5 3 % (9 p e o p l e ) as a c c e p t a b l e  Two p e o p l e s t a t e d t h a t  Travacare  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 a n o 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 t h e degree t o which t h e need f o r HPN service  was met i n t h e 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, 5 3 % t h a t i t was  u s u a l l y met a n d 3 5 % t h a t i t was seldom met. Two r e 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 t h e 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 h e 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 t h e lower mainland and V i c t o r i a areas.  One p e r s o n from t h e 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 h a d e v e r been r e f u s e d HPN t h e r a p y f o r monetary  reasons.  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 t h o u g h t t o be a c c e p t a b l e by 8 2 % o f p e o p l e and l o w by t h e r e s t . Bureaucratic and administrative requirements were r a t e d a s c a u s i n g some d i f f i c u l t y by 7 1 % (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 p e o p l e ) a n d 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 t h e p r o b l e m s c i t e d i n t h i s a r e a 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 h e poor c o m m u n i c a t i o n between t h e KDS d e p a r t m e n t s and t h e p r o b l e m s w i t h back o r d e r s o f supplies. P r o f e s s i o n a l s were a l s o a s k e d 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 r e s p o n s e was an o v e r w h e l m i n g y e s .  81% o f respondents  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 , a n d 94% t h a t equipment s h o u l d be s o . 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 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 . follows.  A summary o f t h e s e i d e a s  E i g h t p r o f e s s i o n a l s c i t e d t h e need t o s t a n d a r d i z e t h e 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 t h e 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 t h e equipment  - 108 -  used.  S i x p e o p l e s t r e s s e d t h e need t o s u p p l y a l l HPN p a t i e n t s w i t h  solutions.  pre-mixed  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 t h e 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 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.  Several profes-  These i n c l u d e d the need  f o r a p e r s o n i n c h a r g e 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, t h e need f o r a  d i r e c t i o n s t a t e m e n t from the M i n i s t r y o f H e a l t h , and t h e need t o f i n d 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 t h e need f o r improved  cheaper  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 p e r s o n s t r e s s e d t h e need f o r HPN f o r more c h i l d r e n i n t h e p r o v i n c e .  PART 3:  CHART DATA  Vancouver G e n e r a l H o s p i t a l  V a n c o u v e r 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 d a t a show t h a t 12 o f t h e s e p a t i e n t s have a c c o u n t e d  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 t h e 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 a r e s t i l l  on  t h e 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 t h e Hickman o r B r o v i a c t y p e .  Catheter  l i f e was on a v e r a g e 26.5 months f o r 10 removed c a t h e t e r s . F o u r o f t h e s e  - 109 -  c a t h e t e r s were removed b e c a u s e 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 t h e f i n a l 2 c a t h e t e r s were removed b e c a u s e o f p e r f o r a t i o n and  dislodgement.  E i g h t p a t i e n t s were male and 6 f e m a l e w i t h ages r a n g i n g from 28 t o 70 and t h e mean b e i n g 39.8 y e a r s . a r e a o f the p r o v i n c e .  years  A l l b u t 2 p a t i e n t s l i v e d i n the l o w e r m a i n l a n d  The r e a s o n f o r HPN t h e r a p y  d i s e a s e and i n the r e m a i n i n g 4 was,  i n 10 p a t i e n t s was  respectively, ulcerative colitis,  Crohn's inflam-  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.  Eight patients received  p r e - m i x e d 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.  Eleven  administered  B.C.  HPN  patients  s o l u t i o n s d a i l y , and the o t h e r s , 5 days p e r week.  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 as a t h e r a p y ( T a b l e 5-33).  parenteral n u t r i t i o n  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 Demand f o r home t h e r a p y  f o r a s m a l l 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. Year 1973 1974 1975 1976 1977 1978 1979 1980 1981 1982 1983 1984 1985  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 # of Pt.  # o f P t . Days  Avg. # o f Days per P t .  8 27 27 29 91 99 121  316 766 942 998 1399 1680 1970  39.5 28.4 34.9 34.4 15.4 17.0 16.2  115  1815  15.8  156 204 277  2225 2465 3779  14.3 12.1 13.6  -  Concluding  110  -  Comments  Unfortunately,  a t the time o f w r i t i n g , c h a r t data 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 , V a n c o u v e r , were n o t a v a i l a b l e . 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 .  Review  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 t h e questionnaire  respondents.  - I l l -  CHAPTER 6:  DISCUSSION AND CONCLUSIONS  This thesis has generated a great deal of descriptive data regarding the home parenteral nutrition program offered to British Columbians.  However,  because of the small number of patients and professionals surveyed and the limited amount of chart data available, i t i s d i f f i c u l t to make definitive comments regarding the successes and problems of the system.  Nevertheless, when  this large body of information i s s i f t e d , a variety of general themes emerge. In this final chapter of the thesis, an attempt w i l l be made to c l a r i f y these themes.  C l i n i c a 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 i n i c a l results at least equivalent to those reported in the literature 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 literature values were 6 to 22 months. The percentage of total time spent i n 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 t h o s e l i v i n g o u t s i d e t h e lower m a i n l a n d  area  had more p h y s i o l o g i c a l p r o b l e m s 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 a p p e a r s 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 p r o b l e m s , 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 t h e g e n e r a l  p o p u l a t i o n n o t on HPN t h e r a p y .  The a r 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 t o h e a l t h c a r e i n t h e 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 r o v e d from t h e 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.  Patient Selection  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 a p p e a r s t o be a p p r o p r i a t e from t h e 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 t h e c l i n i c a l results achieved.  However, w h i l e t h r e e o f t h e 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 , t h e r e s u l t s o f t h e p a t i e n t s u r v e y showed t h a t l i v i n g a l o n e d i d n o t a d v e r s e l y e f f e c t outcome. The i s s u e o f w h e t h e r 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 u n d e c i d e d a t t h i s t i m e , as t o d a t e 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 t h e t r e n d i n t h e 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 t h e 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 r a i s e d 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 p a t i e n t s .  The ultimate decision w i l l , of course, be  made by the program's a d m i n i s t r a t o r s , based on the i n d i v i d u a l case. that time, i t w i l l  However, at  also be important to consider the o v e r a l l question with  regard to the moral and e t h i c a l issues that i t r a i s e s , and also the f i n a n c i a l implications.  For example, the benefits of HPN therapy to any potential cancer  patient need to be assessed i n terms of increased q u a l i t y of l i f e as well as increased quantity of  life.  F i n a l l y , i n the area of patient s e l e c t i o n , i s the concern voiced by a number of sources, that the need for HPN therapy i n 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 i n the near f u t u r e , as w i l l younger children.  B.  Training  T r a i n i n g of patients appears to be well done, with few complaints and many praises being given by patients and p r o f e s s i o n a l s .  82% of professionals would  apparently l i k e to see a pharmacist involved with the t r a i n i n g , y e t , t h i s may or may not c u r r e n t l y take p l a c e , depending on the hospital i n v o l v e d .  C.  HPN Service  The actual HPN s e r v i c e provided to patients in B.C. seems beset with difficulties.  A recent report in the l i t e r a t u r e  gives a s t a r t i n g 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 t h e r e s u l t s o f t h e  O l e y 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 t h e U n i t e d S t a t e s , w h i c h a s k e d p a t i e n t s t o r a t e t h e i m p o r t a n c e 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 i m p o r t a n c e t o t h e 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 p r e - m i x e d by a pharmacy, supplies,  2) home d e l i v e r y o f  3) r e i m b u r s e m e n t management a n d , 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 discharged emergencies.  home and t h e a v a i l a b i l i t y o f a n u r s e f o r a r o u n d - t h e - c l o c k  Item 3 i s n o t 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 i t e m s 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 t h e program from both t h e 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 a b o u t t h e s a f e t y o f home m i x i n g ,  and t h e 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 p r e - m i x . surveyed, expressed system.  Two p a t i e n t s  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 t h e p r e s e n t  variable  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 h e a n x i e t y c r e a t e d by n o t 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 t h e 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  existed).  The s t a t e d r e a s o n s were  t o promote i n d e p e n d e n c e and a s e n s e o f w o r t h , t o p r o v i d e s t r u c t u r e t o t h e p a t i e n t ' s r o u t i n e , and t o r e d u c e 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 r e a s o n s f o r p a t i e n t m i x i n g o f HPN  solutions  ( p r o m o t i n g i n d e p e n d e n c e 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 a p p e a r 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 s u r v e y s o l u t i o n s may  be an i m p o r t a n t  i n d i c a t e t h a t the t i m e r e q u i r e d to  r e a s o n f o r p r o v i d i n g p r e - m i x e d HPN  mix  solutions.  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 t i m e 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 score  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 t h a n 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  solutions.  d u r i n g the n i g h t - t i m e  A c t u a l l y , b e c a u s e the m a j o r i t y o f t h i s t i m e i s t a k e n  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  c a n n o t g r e a t l y r e d u c e the o v e r a l l t i m e HPN one-half  Nevertheless,  the e x t r a  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  D.  requires.  of s o l u t i o n s  patient.  Follow-up  T a b l e 5-31 see HPN  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 n u r s e  patients a f t e r discharge  pharmacist also should. c i s t were a l s o c o n s i d e r e d respectively.  should  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  Home v i s i t s by a n u r s e , a s o c i a l w o r k e r , and a pharmanecessary  by 82%, 65% and 41% o f p r o f e s s i o n a l s ,  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 i m p o r t a n c e o f good  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  follow-up  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  therapy  requires  - 116 -  ( M a c R i t c h i e , 1978; P r i c e , 1979; L a d e f o 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 n o t p r o v i d e d i n B.C. A l t h o u g h t h e 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  health  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 t h e y meet i n t h e office.  The HPN h o s p i t a l n u r s e s may have l i m i t e d t e l e p h o n e  p a t i e n t , b u t none sees t h e p a t i e n t a t home. excluded  Pharmacists  contact with the  a r e almost e n t i r e l y  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 w o r k e r i n v o l v e d w i t h any  o f t h e 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 . Anecdotal  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  c a r e has c a u s e d p r o b l e m s .  follow-up  F o r example, one p a t i e n t s t a t e d i t was n o t c l e a r whom  t o c o n t a c t when t h e r e were p r o b l e m s a t home, and a n o t h e r months o f t h e r a p y were e x t r e m e l y  difficult.  t h a t t h e f i r s t few  Two p a t i e n t s r e p o r t e d t h a t i t was  v e r y 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 it.  One p e r s o n 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 t i m e s o f i l l n e s s b e c a u s e t h e f a m i l y was u n a b l e 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 t h e s i t u a t i o n . A n o t h e r  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 m e a s u r i n g o f e l e c t r o l y t e s .  This  p r o b l e m seems t o be s u b s t a n t i a t e d by t h e 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 they d i d n o t a l w a y s f o l l o w them ( L o u i e , 1983).  procedures,  - lir-  L a s t l y , c h a r t data from VGH u n i l a t e r a l l y changed t h e i r HPN another d i s c o n t i n u e d symptoms o c c u r r e d . follow-up  solutions.  several One  s i t u a t i o n s where p a t i e n t s  p a t i e n t stopped c o m p l e t e l y ,  the f a t s o l u t i o n s and o n l y r e p o r t e d  C o s t s and  and  clinical  HPN  r e s u l t i n improved outcomes f o r t h e s e p e o p l e .  Benefits  24 p a t i e n t s was  reducing  while  A l l t h i s i n f o r m a t i o n would appear t o i n d i c a t e t h a t improved  Cost of HPN i s high as i n d i c a t e d by T a b l e 3-1. for  i t when  had  c a r e by h e a l t h p r o f e s s i o n a l s would b e n e f i t a t l e a s t a p a r t of the  patient population  E.  revealed  $702,660.  the c o s t t o the B.C.  $28,971 i f they had  Ten  The  1986  operating  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 ,  M i n i s t r y of Health  t o $ 2 1 , 9 2 4 / p a t i e n t / y e a r , from  been s u p p l i e d w i t h c o r e s o l u t i o n s or $36,540 w i t h  pre-mixed s o l u t i o n s .  cost  completely  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 p r e - m i x t u r e  t o c o r e f o r these 10 p a t i e n t s would i n c r e a s e the t o t a l  annual c o s t s by $70,470  t o $773,130. The  c o s t o f HPN  i n the p r o v i n c e  p a t i e n t s are added and, will  be i n c l u d e d .  budget w i l l  is definitely rising.  Each y e a r , more  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  By 1988,  i t i s l i k e l y t h a t the t o t a l HPN  approach one m i l l i o n d o l l a r s .  annual  operating  As mentioned e a r l i e r i n Chapter 3,  t h e s e c o s t s do not i n c l u d e c o s t s 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 . w i t h 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 whether a l l h o s p i t a l s w i l l HPN  continue  questionable  t o absorb the c o s t s w i t h o u t r e q u i r i n g t h a t  be d e f i n e d as a s e p a r a t e h o s p i t a l program i n v o l v i n g s e p a r a t e  consideration.  Thus,  financial  - 118 -  Although  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 t h e 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 forms o f m e d i c a l  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.  other  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 t h e a v a i l a b l e data.  Nevertheless,  a r e p o r t by D e t s k y i n 1986,  centered at the Toronto General  i n d i c a t e d t h a t the HPN  program  H o s p i t a l f r o m 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 $19,232 (1981-82 d o l l a r s ) p e r p a t i e n t or  ($l,606/patient/year).  I n c r e a s e d s u r v i v a l t i m e 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 with a l t e r n a t i v e treatment  of p a t i e n t s i n h o s p i t a l with 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 , 1 9 8 6 ) .  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 w h i c h a t t e m p t e d t o make a c o m p a r i 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 . y e a r o f l i f e on HPN  F o r example, one  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  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 .  year  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 c a s e was c a n c e r the r e a s o n f o r therapy.  HPN  The $1,606 p e r 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 D e t s k y would  represent approximately  10% o f t h e o v e r a l l c o s t o f HPN  o f t h e 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 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.  t h e r a p y , and i s a r e s u l t  c a r e t h a t would o t h e r w i s e  be  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 g r o u p , 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 t h e 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 rate of approximately  $350 p e r day o r $127,750 per p a t i e n t / y e a r .  This  -  -  119  enormous s a v i n g ( o v e r 400% o f the a v e r a g e 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 precludes oral alimentation  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 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 . addressed  I t has not, however, s p e c i f i c a l l y been  by t h i s t h e s i s because o f i n a d e q u a t e  in a c t u a l l y measuring q u a l i t y of l i f 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  C l e a r l y , many p a t i e n t s ' l i v e s depend on  t h e 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 a r e p r o l o n g e d it.  m a j o r i t y of p a t i e n t s surveyed l i f e on HPN can be h i g h .  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  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  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 . not do w e l l .  I t i s a shortcoming  the t h e r a p y .  Nevertheless,  a few  o f t h i s study t h a t i t d i d not  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  patients  provide  are no l o n g e r  on  T h u s , 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  t i o n on p a t i e n t outcome was c o l l e c t e d . for  because o f  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 .  did  concern  s e l e c t i n g and managing HPN  In t h i s way,  informa-  professionals responsible  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  of  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.  Organization  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 t h e 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 , has d e l e g a t e d  two g r o u p s , KDS  i n g and c l i n i c a l f o l l o w - u p  and T r a v a c a r e ,  are c e n t e r e d  to perform these f u n c t i o n s .  system are separated  c o n t r o l of the t o t a l s i t u a t i o n .  Train-  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 . a s p e c t s o f the HPN  and  C l i n i c a l and  administrative  and no one p e r s o n a p p e a r s t o have  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 e n v i r o n m e n t where c o m m u n i c a t i o n and c o n s e n s u s 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 u n a n i m o u s l y 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 - 3 2 ) , 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 p r o b l e m s 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 . example, one p e r s o n d e s c r i b e d how a change i n HPN a r r i v e from T r a v a c a r e  in Calgary,  the v a r i o u s d e p a r t m e n t s o f KDS, c a t i o n s e x i s t i n g between KDS,  p r e s c r i p t i o n took 3 weeks to  a n o t h e r d e s c r i b e d the p r o b l e m s i n d e a l i n g  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 patient.  T h i s l a c k o f c o m m u n i c a t i o n became more o b v i o u s when s p e a k i n g  p a t i e n t s ' HPN  t o the  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  prescriptions.  R a t h e r , o n l y i f a p a t i e n t was  h o s p i t a l was the n u r s e u p d a t e d on the HPN  status.  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 .  readmitted  to  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 p r o b l e m s , f o r example, when a p a t i e n t c o n t a c t e d not c o m p l e t e l y  with  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-  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  h o s p i t a l n u r s e s , who  For  the n u r s e who  Similarly, a  was  Travacare  - 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 c o m m u n i c a t i n g 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 h e r e 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 described i n the l i t e r a t u r e . t o a l l o c a t e HPN  p a t i e n t s to o u t s i d e vendors ( B a p t i s t a , 1984).  It is Baptista'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 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 in the h o s p i t a l .  remove  n u t r i t i o n a l support  teams  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  therapy.  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 . expressed  U.S.  One A m e r i c a n a u t h o r d e s c r i b e s t h e move i n the  Wesley  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 e q u i p m e n t , w h i l e e x p e r i e n c e d personnel  would p r o v i d e f o l l o w - u p c a r e ( W e s l e y , 1984).  hospital clinical G i v e n t h i s , an a t t e m p t  w i l l be made t o s u g g e s t some organizational changes t h a t may the p r o b l e m s d i s c u s s e d above.  These s u g g e s t i o n s  follow.  help to  address  I t i s recommended  that: 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 t h e HPN  d i s t i n c t and n e c e s s a r y 2.  s e r v i c e p r o v i d e d t o B.C.  program as a  patients.  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 e q u i p m e n t .  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 c o m m u n i c a t i o n p r o b l e m s would be m i n i m i z e d .  At present,  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 Travacare.  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 t h e 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 ) .  -  3.  122  -  The p h y s i c i a n s c a r i n g f o r t h e 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  with  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 t h e 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 via the telephone.  o u t p a t i e n t s i n person or  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 k e p t 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. perhaps a i d i n t h i s respect.  A multi-copy  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  F i n a l l y , t h e r e s h o u l d be a mechanism t o e n s u r e  o n g o i n g r e a s s e s s m e n t o f t h e 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 p e r s o n a s s o c i a t e d w i t h t h e M i n i s t r y o f H e a l t h s h o u l d be  appointed  t o a c t as c o - o r d i n a t o r o f t h e o r g a n i z a t i o n a l a s p e c t s o f t h e 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 t i m e s 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 h e p r o c e s s o f making o r g a n i z a t i o n a l  G.  Psychosocial  B.C.  changes.  Issues  p a t i e n t s a p p e a r 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 t h a n t h a t r e p o r t e d by t h e S e a t t l e g r o u p .  The r e a s o n s f o r t h e s e p r o b l e m s , a r e o f  course v a r i e d , but often point t o a lack o f emotional support o r education. 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  follows.  Lack of support by friends or family was a c o m p l a i n t patients.  o f a number o f  E i g h t o f t h e 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 h e 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  initially.  - 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 t h e 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 t h e 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 , does n o t always happen.  1980; J o h n s t o n , 1981).  In B.C., t h i s  F o r many p a t i e n t s , t h e a d j u s t m e n t 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 , b u t f o r a few, t h e unmet need i s r e a d i l y apparent.  An extreme example o f t h i s i s shown by one r e s p o n d e n t 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 t h e e n t i r e time he was on t h e 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  p r o 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 n o t even watch t h e s o l u t i o n s running  in.  This p a t i e n t never adjusted,  p a i n f u l one from b e g i n n i n g  and t h e HPN e x p e r i e n c e  t o end. F o r w h a t e v e r r e a s o n ,  f o r him was a  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 b e c a u s e o f t h e 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 . It i s i n t e r e s t i n g that the p r o f e s s i o n a l s surveyed 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 a d e q u a t e 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  support.  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 a s s o c i a l w o r k e r s 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 t h e o t h e r hand,  although  r e l a t i n g v a r i o u s p r o b l e m s 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 , m e n t i o n t h e 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  p r o b l e m w i t h t h e p a t i e n t q u e s t i o n n a i r e , w h i c h d i d n o t d i r e c t l y ask t h e 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 ? interesting question f o r future  consideration.  T h i s i s an  - 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 t h e l i t e r a t u r e .  l i t t l e assistance i s given t o patients i n t h i s regard. t o , none knew o f t h e O l e y F o u n d a t i o n p a t i e n t s and d e s i g n e d  However, i n B.C., Of t h e p a t i e n t s spoken  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  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  information.  The p a t i e n t s u r v e y showed t h a t f o r t h e m a j o r i t y o f p a t i e n t s , HPN p r o d u c e d 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 - 1 1 ) . (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 .  However, f o r a s m a l l number  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 n o t 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 n o t b e i n g F o r example, one p a t i e n t d e v e l o p e d  provided.  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 t h e 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 t h e  central line for administration of narcotics. 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 h o l i s t i c 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 , b u t e m o t i o n a l  support i s l a c k i n g .  and p s y c h o s o c i a l  I t was t h e 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 w o u l d b e n e f i t from a t l e a s t one home v i s i t by a n u r s e o r s o c i a l w o r k e r i n t h e e a r l y  post-discharge  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 , a n d 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 t h e changes i n l i f e s t y l e r e q u i r e d b e c a u s e 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. the i n v e s t m e n t  Yet,  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 ,  seem a w i s e i n v e s t m e n t ,  given  i t would  h e l p i n g t o w a r d 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 m e d i c a l  care.  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 t h e extra costs.  Recommendations  As a r e s u l t o f t h e i n f o r m a t i o n  gathered  from t h i s t h e s i s , some recommenda-  t i o n s f o r t h e improvement o f t h e HPN program i n B.C. c a n be made f u r t h e r t o t h e 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 t h e 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 t h u s t h e program a d m i n i s t r a t o r s w i l l need to decide 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 t h e B.C. HPN program be m o d i f i e d  1.  To s t a n d a r d i z e  t h e s e r v i c e g i v e n t o each HPN p a t i e n t and  t o 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 p r e - m i x e d c o r e 2.  so a s :  solutions.  To e n s u r e a d e q u a t e and e a s i e r c o m m u n i c a t i o n 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 e n s u r e p a t i e n t s a r e f o l l o w e d - u p a s o u t p a t i e n t s by a t l e a s t one member o f t h e 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 t h e p a t i e n t , a s i d e from t h e p h y s i c i a n .  4.  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Home p a r e n t e r a l n u t r i t i o n : Nurse P r a c t i t i o n e r M a r c h : 42-52.  A psycho-social  P r i n c i p l e s and management.  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 p r o g r a m s . JPEN V o l . 5, No. 2: 157-160. S c r i b n e r , B.H. e t a l . 1970. L o n g - t e r m t o t a l p a r e n t e r a l n u t r i t i o n . 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.  The c o n c e p t  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 M a n u a l . Unpublished. 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 g u t f a i l u r e . Am. J . S u r g . 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 t h e 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.; B y r n e , 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 . A n n a l s 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.; B y r n e , 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 G e n e r a l H o s p i t a l TPN N u r s i n g M a n u a l .  1983.  Vancouver G e n e r a l H o s p i t a l Pharmacy HPN M a n u a l .  Unpublished. Unpublished.  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. W e i s s , Stephen M.; W o r t h i n g t o n , P.H.; P r i o l e a u , M.; R o s a t o , 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 . C a n c e r V o l . 50, No. 6: 1210-1213. W e s l e y , 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 -  W o l f e , 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 N o r t h A m e r i c a 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  Height  2.  Marital Status: Single  Weight  M a r r i e d o r common law  Sex  Divorced  Widowed  3.  Do you: L i v e a l o n e i n a house o r a p a r t m e n t 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 (eg. f a m i l y member) t r a i n e d i n HPN t o be a backup person 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 ,  have you e v e r been o f f  HPN f o r  g r e a t e r than 1 month? 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 r e m e m b e r t h e m , 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 ? Month, Year  Month, Year  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  stopped  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 ? Never  1-2  t i m e s a month  Once a week  M o r e 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 : (examples:  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  have?  Hickman  Broviac  Unknown  Other  Graft  -13610.  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 time 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 your c a t h e t e r ? (Do n o t 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 (Core)  S o l u t i o n s not 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 p r o b l e m s 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 p r o b l e m s  16.  How much e d u c a t i o n d i d you c o m p l e t e ? Elementary  school  High s c h o o l  Post 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  17.  U n i v e r s i t y degree  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 your f a m i l y ' s income: Earned Unemployment i n s u r a n c e  Pension  Welfare Other  -13718.  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 , disable-d e t c . )  F u l l time  Part-time  19a. What i s y o u p r e s e n t p r i m a r y  Full-time  (check o n l y one)  occupation?  Part-time  (check o n l y o n e )  19b. I f you have had a change i n your 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 b e c a u s e o f HPN? No  Yes  Please explain  20.  A r e y o u 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 n o t employed? Retired  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  (Check a l l t h a t a p p l y . )  -138PART I I :  1.  MEDICAL  How many c a t h e t e r s h a v e y o u h a d 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)  For each c a t h e t e r t h a t you have had, p l e a s e l i s t i n t h e t a b l e below; as -best you 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 reason f o r removal,  Number o f m o n t h s  i f ever removed.  Reason f o r removal  (most Catheter # 1  recent)  Catheter # 2 Catheter # 3 Catheter # 4 Catheter # 5 Catheter # 6 Catheter # 7 Catheter # 8 Catheter # 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 c o m p l e t e t h e t a b l e below, as b e s t you can remember: Number o f Admission  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 a r o u n d 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 c a u s e d 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 health.  -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  Infrequent  Frequent  a)  c r a m p i n g i n hands and f e e t  b)  loss of hair  c)  bone o r j o i n t p a i n  d)  dry, scaly skin  e)  skin rashes  f)  ankle or f e e t swelling  g)  shortness of breath while infusing  h)  g e n e r a l i z e d weakness  i)  episodes of nervousness, j i t t e r i n e s s & sweating  j)  frequent urination while infusing 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?  .  Never a)  c r a m p i n g i n hands and f e e t  b)  loss of hair  c)  bone o r j o i n t p a i n  d)  dry, scaly skin  e)  skin rashes  f)  ankle or feet swelling  Infrequent  Frequent  -141-  Never g)  generalized weakness  h)  episodes of nervousness j i t t e r i n e s s & sweating  Infrequent  ^  i)  episodes of dizziness when standing up occurring more than twice a week  8.  Please indicate the reason for your being on HPN. (Examples: f i s t u l a , radiation  9.  Frequent  Crohn's disease)  enteritis)  Do you infuse Intralipid ? No  Yes  If yes, please check how often you have any of the following symptoms during or shortly after the infusion of Intralipid '  Never a)  diarrhea  b)  nausea  c)  shortness of breath  d)  feeling of pounding in your chest  e)  unusual taste in mouth  f)  increased abdominal cramping Others (please l i s t )  g)  Infrequently  Frequently (at least with every other infusion)  -142-  10.  11.  How h a s 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  Increased  Decreased  No a p p e t i t e  P l e a s e l i s t a l l m e d i c a t i o n s (both p r e s c r i p t i o n and t h o s e you 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 taking.  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 : S O C I A L 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 . t o when y o u w e r e n o t on HPN, w h a t p r o b l e m s b e i n g on HPN?  have you e x p e r i e n c e d s i n c e  Please i n d i c a t e both t h e degree of s e v e r i t y o f t h e problem  and t h e way i t i n t e r f e r s w i t h y o u r  life.  Interference with: a.  Sleep None  Moderate  Severe  Moderate  Severe  In w h a t way  b.  Travel None In w h a t way  Compared  -143-  c.  Sex l i f e None  Moderate  Severe_  In what way  d.  Exercise None  Moderate  Severe_  In what way  e.  Leisure time a c t i v i t i e s or community None  activities  Moderate  Severe  Moderate  Severe  In what way  f.  Marital  relations  None In what way  Family l i f e and social l i f e None  Moderate  Severe_  Moderate_  Severe  In what way  h.  Religious  activities  None In what way  -144-  i.  Work None  Severe  Moderate  In what way  j.  Other, 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.  A r e 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  Not a p p l i c a b l e  No  -145-  If you answered No t o q u e s t i o n 3, why do you n o t e a t ? apply.) Told not t o eat  Fear o f nausea  No a p p e t i t e  Fear o f v o m i t i n g  Fear of d i a r r h e a  No need t o e a t  (Check a l l t h a t  Other ( p l e a s e e x p l a i n )  If 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, b u t 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 Please explain  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? No  (Check-all that apply.)  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  Please explain  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, b u t 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 Please explain  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? 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? If y e s , p l e a s e e x p l a i n  Yes  No  Yes  No  -14711.  Do you s e e 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 .  12.  13.  S p e c i a l i s t doctor  How o f t e n  G.P.  How o f t e n  Nurse  How o f t e n  Pharmacist  How o f t e n  other  How o f t e n  '  When you have p r o b l e m s 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 y o u u s u a l l y c o n t a c t ? S p e c i a l i s t doctor  G.P.  Pharmacist  Other  Nurse  Have y o u 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 your 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 s e e your 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 cost.  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 Very P o s i t i v e Please explain  3  4 No E f f e c t  5  6  7 Very  Negative  -14815.  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 Very P o s i t i v e  3  4 5 No E f f e c t  6  7 Very  Negative  Please explain  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 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 very negative.) C i r c l e t h e a p p r o p r i a t e number.  1 2 Very P o s i t i v e  3  4 No E f f e c t  5  6  7 Very  Negative  Please explain  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 . If 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 the question p l e a s e f e e l f r e e t o do s o .  - 149 -  APPENDIX II  -150-  HOME PARENTERAL NUTRITION -  HEALTH PROFESSIONAL SURVEY  This survey is divided into six parts.  JULY 1986  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 c a l l for additional comments. 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  Please  -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 f o r HPN? Minimum  2.  patients  Maximum  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  a)  Total jejuno-ileal resection  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 n o t  No .  amenable t o s u r g i c a l a l l e v i a t i o n  3.  d)  End j e j u n o s t o m y syndrome  e)  Bowel r e s t  f)  Adjunct t o cancer therapy  g)  A d j u n c t t h e r a p y pre'-op  h)  Other  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 n o t 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  Yes  No_  Comment  b)  Physical co-ordination d i f f i c u l t i e s Comment  -152c)  S e n i l i t y o r memory l o s s  Yes  No  Yes  No_  Comment  d)  Other 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  5.  3  >3  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 possible therapy? None 6-12 months  6.  2  Less t h a n 3 months  3-6 months  o v e r 12 months  F o r P a r t I do you c o n s i d e r y o u r s e l f Expert  Knowledgeable  Not k n 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 o f 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 Essential  Desirable  Not N e c e s s a r y  -1532.  Is p h y s i c a l a s s i s t a n c e ( e g . 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 (note: 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 ) Essential  3.  Desirable  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  4.  Not Necessary  No  Perhaps  A r e 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 y o u c o n s i d e r y o u r s e l f Expert  Knowledgeable  Not K n o w l e d g e a b l e  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 average  intellegence  At l e a s t average 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 important  b)  Highly motivated  Moderately motivated  Motivation i s not important  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 Expert  Knowledgeable  Not Knowledgeable  -154PART IV:  1.  HPN SERVICE  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 t o t a l l y 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  4.  Not Necessary  Solutions and supplies should be provided: Weekly  5.  Desirable  Every 2 weeks  Monthly  Ideally solutions and supplies should be provided by: A hospital  Private company_  Government agency (eg. KDS) Comments  Other  -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 p r o b l e m s ) by: (check as many as a p p r o p r i a t e ) Specialist  Yes  No  How o f t e n  General 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 _  Pharmacist  Yes  No  How o f t e n  Other  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 specialist's office  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 Other  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.  A r e home v i s i t s , e i t h e r p r e - o r  - d i s c h a r g e f r o m h o s p i t a l r e q u i r e d by:  Specialist  Yes  No  When  G.P.  Yes  No  When  Nurse  Yes  No  When  Pharmacist  Yes  No  When  S o c i a l worker  Yes  No  When  Other  -156-  10.  11.  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 they f i r s t contact? Specialist  G.P.  Pharmacist_  Depends on t h e n a t u r e o f t h e problem  For p a r t IV do you c o n s i d e r y o u r s e l f : Expert  PART V: 1.  2.  Nurse  Knowledgeable  Not Knowledgeable  PATIENT SELECTION AND TRAINING  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 ? Doctor  Yes_  No_  Sometimes_  Nurse  Yes_  No_  Sometimes  Pharmacist  Yes_  No_  Sometimes  Dietician  Yes_  No_  Sometimes  S o c i a l Worker  Yes  No_  Sometimes_  Psychiatrist/Psycologist  Yes  No  Sometimes  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. Other  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? Doctor  Nurse  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  (Check as many as a p p r o p r i a t e )  Pharmacist  -1574.  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 of the disease B a s i c s o f 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 Preparation of solutions Administration technique P o t e n t i a l problems Other  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? Doctor  Pharmacist  Other  7.  Desirable  Not R e q u i r e d  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 : Essential  9.  :  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 : Essential  8.  Nurse  Desirable  Not R e q u i r e d  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 o f c a r e i n and o u t o f 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 : Expert  Knowledgeable  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 a n d 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 . a l l t h e q u e s t i o n s a n d comment w h e r e y o u f e e l  1.  appropriate.  Patient selection i s : Good  Fair  Poor  Fair  Poor  Fair  Poor  Comment  2.  Trainingi s : Good Comment  3.  Follow-up i s : Good 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 Comment  Fair  Poor  Please  answer  -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) Low  is:  Acceptable  High  Comment  9.  Complication rate (not catheter related) i s : Low  Acceptable  High  Comment  10.  Incidence of psycho/social problems i s : Low Comment  Acceptable  High  -160-  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 : little difficulty  some d i f f i c u l t y  a great deal of d i f f i c u l t y or are very time consuming_ Comment  12.  I s t h e r e a n e e d 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 ? Training  Yes  No  Service  Yes  No  Equipment  Yes  No  Other  .  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 : Expert  Not  Knowledgeable  T h a n k y o u v e r y muct-< f o r y o u r t i m e i n fj] i;no  Knowledgeable  jt t h i s Question  OL  

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