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Development of a nursing assessment tool to evaluate the home hemodialysis patient Albers, Jo Ann, 1973

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DEVELOPMENT OF A NURSING ASSESSMENT TOOL TO EVALUATE THE HOME HEMODIALYSIS PATIENT by JO ANN ALBERS B . S . N . , Un iver s i ty of Washington, 1963 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n the School of Nursing We accept t h i s thes i s as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l , 1973 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make i t freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the Head of my Department or by his representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of British Columbia Vancouver 8, Canada i i o ABSTRACT The purpose of t h i s study was to construct a nursing assessment t o o l to a s s i s t the nurse i n evaluat ing the home hemodialysis p a t i e n t ' s l e v e l of funct ioning and h i s need for fo l low up care . Relevant var iab le s for i n c l u s i o n i n the t o o l were i s o l a t e d fromi a review of the l i t e r a t u r e on the problems encountered by the hemodialysis pa t ient ; a review of twenty pat ient records; nine semi-structured interviews with pat ients who had been rated by d i a l y s i s personnel as having made exce l l en t , adequate or poor adjustments; and a questionnaire submitted to eleven d i a l y s i s nurses who were asked to name those factors they used when r a t i n g a pat ient poorly ad-justed or wel l adjusted, A three category r a t i n g system was used for f o r ty -eight items i n the t o o l . A score of one on any item i n -dicated the l ea s t need for fol low up care and a score of three the greatest need. Five d i a l y s i s experts agreed the t o o l contained the appropriate var iab les which are important i n determining the l e v e l of funct ioning and needs for fol low up care of the home hemodialysis pa t i en t . A r e l i a b i l i t y t e s t ing using four pa i r s of nurses to assess twenty pat ients was s i g n i f i c a n t at the .05 l e v e l i i i IV i n d i c a t i n g the pat ient r a t i n g provided by the t o o l i s independent of the r a t e r . 76 pages ACKNOWLEDGEMENTS I would l i k e to express my apprec ia t ion to the pat ients and s t a f f at the Northwest Kidney Center for t h e i r cooperation i n t h i s study; In p a r t i c u l a r I wish to thank Thomas Sawyer, M . D . , Marjorie C o l i n , R . N . , Linda Cook, R . N . , and Kay Olhe i s e r . My spec i a l thanks to Marion Jackson and Kathy Copenhaver for t h e i r ass i s tance ; I also wish to thank Professors Mary Cruise and Helen E l f e r t for t h e i r advice and guidance. v TABLE OP CONTENTS Page ACKNOWLEDGEMENTS y LIST OF TABLES . v i i i LIST OF FIGURES i x CHAPTER I . INTRODUCTION TO THE STUDY 1 Introduction . . . . . . . . . . . . . . . 1 The Purpose of the Study . . . . . . . . . 5 The Problem i . . . . i' i i i . i , i i . 5 Assumptions 9 Def in i t i ons i . 10 Limita t ions of the Study 10 I I . REVIEW OF THE LITERATURE 12 P h y s i o l o g i c a l Problems of the D i a l y s i s Pat ient 12 Soc ia l -Psycholog ica l Factors of the Home Hemodialysis Pat ient . . . . . . . 18 Assessment Tools and Per iod ic Evaluat ion Schemes for Maintenance Hemodialysis Pat ients . . . . . . . . . . 20 General Assessment Tools . 22 I I I . METHODOLOGY 27 Overview . . 27 Sample 27 Construction of the Prel iminary Tool . . . 28 The Rating Scale 35 v i v i i CHAPTER Page I I I . METHODOLOGY (Continued) V a l i d a t i o n 36 Pre-Test . 36 R e l i a b i l i t y Test ing 36 IV. ANALYSIS OF THE DATA 37 V a l i d i t y Test ing 37 R e l i a b i l i t y Test ing 37 Analys i s of Results of Assessment . . . . . 40 V. SUMMARY, CONCLUSIONS, AND RESEARCH IMPLICATIONS .49 Summary . . . . . . . . . . . . . 49 Conclusions . . . . . . • • • • • 51 Research Implicat ions . • 52 BIBLIOGRAPHY 53 APPENDICES 59 A . Nursing Assessment Form for Maintenance Home Hemodialysis Pat ient 60 B. Nurses' Questionnaire . 68 C. Semi-Structured Pat ient Interview Schedule 70 D. V a l i d a t i o n Form 72 E . Instruct ions to Nurses P a r t i c i p a t i n g i n the R e l i a b i l i t y Test ing 74 LIST OF TABLES TABLE Page l i Well Adjusted Pat ient . . . . . 31 2 A Poorly Adjusted Pat ient 31 3A Paired Nurses Scores of Functioning Level of Pat ient and Differences i n Nurse Scores 38 4i S t a t i s t i c a l Treatment 39 v i i i LIST OF FIGURES FIGURE Page l ; Nurse A Scores 42 2, Nurse B Scores 43 3. Mean Scores 44 4; Comparison of Percentage Scores on Selected Variables of Group x and Group y 48 i x CHAPTER I INTRODUCTION TO THE STUDY I . INTRODUCTION This study focuses on systematic nursing assess-ment to i d e n t i f y the needs of the maintenance home hemo-d i a l y s i s p a t i e n t . The f i r s t a r t i f i c i a l kidney was developed by Abel , 1 Rowntree and Turner i n 1913» but was never used on humans. The f i r s t d i a l y z e r with p r a c t i c a l a p p l i c a t i o n for the t rea t -2 ment of uremia was developed by Wilhelm K o l f f i n 1943* Maintenance hemodialysis was demonstrated to be a procedure which could lead to the r e h a b i l i t a t i o n of some 3 pat ients with terminal renal f a i l u r e . In i960 Dr . Belding Scr ibner and h i s group at the Univer s i ty of Washington i n Seatt le implanted the f i r s t Quinton-Scribner shunt i n the 1 J . J . Abel , L . G. Rowntree, and B. B, Turner, "on the Removal of D i f fu s ib l e Substances from C i r c u l a t i n g Blood by Means of D i a l y s i s , " Transactions Assoc ia t ion American  Phys ic ians , 1913* PP» 28 - 51. 2 W. F . K o l f f , " F i r s t x d i n i c a l Experience with the A r t i f i c i a l K idney , " Annals of Internal Medicine, v o l . LXII , (1965). P. 608. 3 Belding H , Scr ibner , et a l . , "The Treatment of Chronic Uremia by Means of Intermittent Hemodialysis 1 A Pre-l iminary Report , " Transactions American Society for A r t i f i c i a l  Internal Organs, v o l . VI , (I960), p . 114 1 2 forearm of a pat ient and began per iod ic treatments using a 4 pumpless, low flow d i a l y z e r . Other treatment centers were soon es tabl i shed i n North America and Great B r i t a i n . The extremely high f i n a n c i a l cost of ho sp i t a l based treatment coupled with the lack of f a c i l i t i e s and t ra ined personnel lead to the development of programs which t ra ined 5 pat ients to d ia lyze themselves at home. Home d i a l y s i s of fers several advantages over h o s p i t a l based programs. These include; ( 1 ) reduced incidence of p h y s i o l o g i c a l complications due to more f r e -quent d i a l y s i s which was poss ible because of the lower cost and a v a i l a b i l i t y of space, ( 2 ) greater independence and s e l f 4 Wayne Quinton, David D i l l a r d , and Belding Scr ibner , "Cannulation of Blood Vessels f o r Prolonged Hemodialys is , " Transact ion American Society fo r A r t i f i c i a l Internal Organs, v o l . VI , ( I 9 6 0 ) , p . 1 0 4 . 5 R. A . B a i l l o d , et a l . , "Overnight Hemodialysis i n the Home," Proceedings of the European D i a l y s i s and Transplant  As soc i a t ion , v o l . I I . ( 1 9 6 5 ) . P. 9 9 ; K . C u r t i s , et a l . . "Hemo-d i a l y s i s i n the Home," Transactions American Society for  A r t i f i c i a l Internal Organs, v o l . XI . ( 1 9 6 5 ) . P. 7 s Joseph W. Eshback, et a l . , "Unattended Overnight Home Hemodialys is , " Transactions American Society for A r t i f i c i a l Internal Organs, v o l . XI I , ( 1 9 6 6 ) , p . 3 4 6 ; C . C L . Hampers, J . P. M e r r i l l and E . Cameron, "Hemodialysis i n the Home - A Family A f f a i r , " Transactions American Society for A r t i f i c i a l Internal Organs, v o l . XI , ( 1 9 6 5 ) , p . 3I J . P. Pendros and Terrance P o l l a r d , "E ight Years Experience with a Community D i a l y s i s Center , " Transactions American Society for A r t i f i c i a l Internal Organs, v o l . XVI, ( 1 9 7 0 ) , p . 7 7 . ' 6 C. R. Blagg, et a l . , "Home D i a l y s i s : Six Years Exper ience , " New England Journal of Medicine, v o l . CCXXCIII, (November, 1 9 7 0 ) , pp. 1 1 2 6 - 1131. 3 confidence for the pa t i ent , (3) greater freedom to schedule d i a l y s i s at times most convenient for himself , (4) g rea t ly lowered cost of treatment, (5) reduced need for profes s iona l services and medical f a c i l i t i e s , and (6) l e s s t r a v e l time required from home to medical f a c i l i t y which was often many miles away, A major disadvantage of home d i a l y s i s i s the i n -creased stress on the spouse of the pa t ient , e s p e c i a l l y when 7 the spouse assumes a major part of the p a t i e n t ' s care . There are current ly 4,857 pat ients on hemodialysis i n the United States (reported by 88.7 per cent of center s ) . 8 Of these, 2,001 pat ients are on home hemodialysis . In the acute phase of his i l l n e s s , and during his t r a i n i n g per iod , many services are ava i lab le to the p a t i e n t . Once he leaves the treatment center to perform hi s own d i a l y s i s he receives medical consul ta t ion and technica l backup i n response to h i s own request . No systematic assessment to seek out p h y s i o l o g i c a l or soc i a l -p sycho log ica l 9 d i f f i c u l t i e s current ly e x i s t s ; 7 P h i l i p W. Shambraugh, et a l ; , "Hemodialysis i n the Home - Emotional Impact on the Spouse," Transactions  American Society for A r t i f i c i a l Internal Organs, v o l . XIII , (1967), pp; 41 - 45. 8 Computer Pr int-Out National D i a l y s i s Regis try , Research Triangle Park, North Caro l ina , January, 19?2. 9 C. Blagg, "Need fo r Home Follow Up Care , " Un-published Report to Kidney Disease Advisory Committee, Washington-Alaska Regional Medical Program, 1972. 4 Assessment of pat ient needs i s the f i r s t step i n the nursing process, considered to be fundamental to pro-fe s s iona l nurs ing . Several nurs ing leaders have examined t h i s process . Lewis describes the process as cons i s t ing of a knowledgeable, purposeful ser ies of thoughts and act ions 10 to i d e n t i f y pat ients * needs. She sees t h i s process as con-s i s t i n g of assessment, in te rvent ion , and eva luat ion . Smith also emphasized the need for t h i s process when she stated, " I f nurs ing i s to be re l i eved of haphazard, non-s c i e n t i f i c methodology, i t must focus on those methods which 11 provide a sound approach to the so lv ing of nursing problems". McCain looked at the way nurses determined pat ient needs and concluded that they tend more to use i n t u i t i o n 12 than systematic assessment. She pointed out the d i f f i c u l t i e s of making r e l i a b l e and accurate assessments i n t h i s way. This conclusion was also emphasized by Zimmerman and 13 Gohrke i n t h e i r study of the nursing process . They demon* 10 L . Lewis, "Thi s I Believe About the Nursing Process - Key to Care , " Nursing Outlook, v o l . XIV, no. 5* (May, 1968), pp. 26 - 29; 11 Dorothy Smith, Manual for the Use of the Nursing  His tory T o o l . College of Nursing, Univer s i ty of F l o r i d a , G a i n s v i l l e , F l o r i d a , 1971» P« 1» 12 R. Faye McCain, "Nursing by Assessment Not Intu-i t i o n , " American Journal of Nursing, v o l i LXV, no. 4, ( A p r i l , 1965), vTTT. 13 _.;Donna Zimmerman and Carol ,Gohrke, "The Goal D i r -ected Nursing Approachi I t Does Work," American Journal of  Nursing, v o l . LXX, no. 2, (February, 1970), p . 106. 5 s t ra ted that assessment based s o l e l y on i n t u i t i o n c a r r i e d no assurance that the needs of i n d i v i d u a l pat ients are i d e n t i f i e d . Though assessment by i n t u i t i o n has been widely used i t has been^ pointed out that nurses have f e l t a strong need for a methodical system of data gathering and pat ient assessment that i s e f f i c i e n t , economical, r e a l i s t i c , and 14 p r a c t i c a l . I t i s the intent of t h i s study to provide a t o o l which w i l l a s s i s t the nurse to assess the l e v e l of funct ion-ing of the home hemodialysis pat ient i n a methodical , systematic, and r e l i a b l e way, I I . PURPOSE OF THE STUDY The purpose of t h i s study i s to develop a r e l i a b l e assessment t o o l to be used by a nurse to i d e n t i f y a home d i a l y s i s p a t i e n t ' s need for fol low up care . I t would provide an e f f i c i e n t and economical means of r a t i n g the l e v e l of funct ioning achieved by the pat ient i n s o c i a l -psycholog ica l and p h y s i o l o g i c a l areas. I I I . THE PROBLEM Statement of the Problem What are those soc i a l -p sycho log ica l and p h y s i o l o g i c a l var iab les which are important i n determining the l e v e l of 14 Dolores E . L i t t l e and Doris Carneva l i , Nursing  Care Planning, P h i l a d e l p h i a : J . B. L i p p i n c o t t Company, 1969 , P. 6 5 . 6 funct ioning of the home hemodialysis pat ient? Can these var iab le s be organized into a t o o l which when used to assess a pa t i ent , w i l l give r e l i a b l e and v a l i d data to a s s i s t the nurse to determine h i s needs for fol low up care? Spec i f i c Objectives The s p e c i f i c object ives of the study are t o : (1) de-termine what a pat ient regards as important i n evaluat ing h i s own l e v e l of wel l -be ing , (2) determine what experienced d i a l y s i s personnel f e e l are the most important measures of pat ient wel l -be ing , (3) construct an instrument which w i l l provide the nurse with a wr i t ten r a t i n g of a pat ient on these i d e n t i f i e d va r i ab le s , and (4) tes t the instrument for r e l i a b i l i t y and v a l i d i t y . S igni f i cance of the Problem Several hemodialysis nurses have pointed out the need for ongoing assessment and fol low up care i n the home, Komorita and Brand explored problem areas with a group of pat ients and concluded that the need for psychologica l and s o c i o l o g i c a l support d id not end with the h o s p i t a l i z a t i o n 15 period and that t h i s support should be ongoing, A program of home v i s i t s by the d i a l y s i s center 16 personnel to the home pat ient i s described by Stewart, 15 L , Brand and N, I . Komorita, "Adapting to Long Term Hemodialys i s , " American Journal of Nursing, v o l , LXVI, no. 8, (August, 1966), p . 1781, 16 Betty M. Stewart, "Hemodialysis i n the Hornet The Value of House C a l l s by Tra in ing Personnel , " Nursing C l i n i c s  of North America, v o l . IV, (September, 1969). p . 432, 7 She points out that though the pat ient performs h i s treatment at home the center personnel continue to be responsible for h i s wel l -being and must assure themselves through per iod ic v i s i t s that a l l i s going wel l f o r the p a t i e n t . She does not describe a systematic assessment scheme. Discuss ing the family of the pat ient with long term i l l n e s s , Gaspard points out the severe d i srupt ions that can occur to the ent i re family u n i t because of the long term i l l n e s s of one of i t s members. She states that nurses must cont inua l ly assess the needs of these f a m i l i e s , plan services c a r e f u l l y and " sys temat ica l ly evaluate t h e i r progress toward es tabl i shed 17 goa l s " • Systematic assessment based on standard c r i t e r i a allows the nurse and other health care team members to bet ter plan support a c t i v i t i e s for the pat ient and h i s f ami ly . Blagg has pointed out that d i a l y s i s centers working with very l i m i t e d budgets are understandably re luctant to invest funds i n fol low up care to the pat ient who i s funct ioning wel l at home when t h i s would l i m i t t h e i r 18 a b i l i t y to care for new pa t i en t s . This reemphasizes the 17 Nancy Gaspard, "The Family of the Pat ient with Long Term I l l n e s s , " Nursing C l i n i c s of North America, v o l , V, no. 1, (March, 1970), p . 80. 18 C. Blagg, "Need for Home Follow Up Care , " Un-published Report to Kidney Disease Advisory Committee, Washington-Alaska Regional Medical Program, 1972. 8 need fo r e f f i c i e n t and inexpensive methods of determining which pat ients have the greatest need fo r fol low up care so that s t a f f may be u t i l i z e d to best advantage. In addi t ion to detect ing needs and planning care there i s a need to begin to i s o l a t e those factors which most contribute to b io-psycho-soc ia l health i n the mainten-ance hemodialysis pat ient so that some pred ic t ive a b i l i t y might be e s tab l i shed . Meldrum did an extensive retrospect ive survey of pat ients i n t h e i r program attempting to sys temat ica l ly describe the ef fects of hemodialysis on s o c i a l funct ion ing . They pointed out that "with increas ing cognizance on the part of the p u b l i c , governmental agencies and the medical profess ion that d i a l y s i s treatment i s medical ly pos s ib le , the need of some basis of judgement as to the soc io log ic as wel l as medical worth of such treatment i s increa s ing ly 19 apparent; Aydel lote describes an exploratory study on a group of fourteen d i a l y s i s pat ients conducted for the purpose of l earn ing more about nursing problems i n t h i s group. She points out the need for further de l inea t ing 19 M. Meldrun, J . Wolfram and M. Rubin i , "The Impact of Chronic Hemodialysis Upon the Socio-economics of a Veteran Pat ient Group," Journal of Chronic Diseases v o l . XXI, (1968), pp; 37 - 52. problems. Referr ing to d i a l y s i s pa t ient s , Cummings stated "the t o t a l ef fect iveness with which medical treatment, voca t iona l , s o c i a l and a l l other r e h a b i l i t a t i o n goals are achieved depends l a r g e l y on the sharpness with which the nurse observes the d i f f i c u l t i e s the pat ient encounters" . 21 Systematic assessment could f a c i l i t a t e that sharpness. A standardized r a t i n g scale with good r e l i a b i l i t y and v a l i d i t y would a id i n determining the e f fect of the manipulation of non-patient var iab les such as d i f f e rent types of equipment and procedural changes. The value of a t o o l which would a s s i s t nurses to r e l i a b l y , conveniently, and e f f i c i e n t l y assess a p a t i e n t ' s need for fo l low up care seems wel l e s tab l i shed . IV. ASSUMPTIONS This study i s based on these assumptions: (1) there are f ac tor s , some of which w i l l be common to a l l hemo-d i a l y s i s pa t ient s , which, when considered, w i l l r e f l e c t h i s needs, (2) pat ients are able to i d e n t i f y many of t h e i r needs, 20 Myrtle Aydelotte , "Nursing Care of Pat ients Under> going Hemodialysis : A Study Report , " Unpublished Report presented to the Third Annual Veterans Adminis trat ion Workshop of Chronic Hemodialysis, Chicago, A p r i l , 1967. 21 Jonathan Cummings, Hemodialysis : The Pressures and How Pat ients Respond," American Journal of Nursing, v o l . LXX, no. 1, (February, 1970), p . 76. and, (3) assessment with the use of a t o o l allows more systematic c o l l e c t i o n of data than an informal assessment. V. DEFINITIONS Pat ient In t h i s study the term w i l l r e fer to the maintenance home hemodialysis p a t i e n t . Maintenance Home Hemodialysis Pat ient A person with i r reversab le kidney disease who must receive per iod ic hemodialysis to susta in l i f e and who performs t h i s treatment i n h i s home se t t ing without the services of a medical a s s i s t an t . Nurse In t h i s study t h i s term w i l l r e fer to a reg i s tered nurse with experience i n the care of hemodialysis pa t i en t s . Needs The term w i l l be used to designate a requirement of the pat ient a r i s i n g from the imposi t ion of h i s i l l n e s s on h i s l i f e and perceived by the nurse as being within the realm of r e s p o n s i b i l i t y of the health team to of fer assistance to meet. V I . LIMITATIONS OF THE STUDY This study i s subject to the fo l lowing l i m i t a t i o n s : (1) Only pat ients being d ia lyzed on p a r a l l e l flow d i a l y s i s equipment w i l l be included i n the study, and (2) Pat ients w i l l a l l be r e s id ing i n Washington State, and from the 11 Northwest Kidney Center i n Seatt le which has a unique community support system for rena l pa t i ent s . Therefore, the needs and l e v e l of funct ioning of these pat ients cannot be general ized except to pat ients from centers with a very s i m i l a r philosophy and o r i e n t a t i o n . CHAPTER II REVIEW OF THE LITERATURE I . PHYSIOLOGICAL PROBLEMS OF THE DIALYSIS PATIENT P h y s i o l o g i c a l Problems Unrelated to the D i a l y s i s Procedure General discuss ions of medical complications can 1 be found i n Pendras and Stinson and Hampers and Schupak, These are anemia, h e p a t i t i s , rena l osteodystrophy, neur-opathy, hypertension, ,congest ive heart f a i l u r e and sexual problems. One study of anemia i n maintenance hemodialysis pat ients points th i s out as a pers i s tent problem which r e su l t s i n high r i s k of hepa t i t i s and i r o n overload from 2 repeated t rans fus ions . These inves t iga tors demonstrated that a majori ty of pat ients can be maintained on regular d i a l y s i s without blood transfus ion by accepting hematocrits i n the 17 - 19 per cent range. Iron def ic iency w i l l become apparent unless monthly blood loss i s l e s s than 250 ml . and 1 Jerry Pendras and Gerald St inson, The Hemodialysis  Manual, Sea t t l e , (1969). pp. 1 - 4$ Constantme Hampers and Eugene Schupak, Long Term Hemodialysis . New Yorkt Grune and S t ra t ton , 1967, pp. 70 - 146. 2 C. M. Compty, D. McDade and M. Kaye, "Anemia and Iron Requirements of Pat ients Treated by Maintenance Hemo-d i a l y s i s , " Transactions American Society for A r t i f i c i a l  Interna l Organs, v o l ; XIV. (1968), pp. 426 - 432. 12 13 die tary absorption of i r o n i s i n s u f f i c i e n t . Therefore, i r o n therapy w i l l be necessary i n most pa t i ent s . H e p a t i t i s , which has been found to be present i n a c a r r i e r state i n some hemodialysis pa t ient s , has seemed to be re l a ted to frequent blood transfusions which carry the v i r u s , Blumberg points out that even i n pat ients who have had a low rate of t rans fus ion, or none at a l l , h e p a t i t i s i s 3 seen; He urges tes ing pat ients for Aus t ra l i an antigen p o s i t i v e blood and of considering non-parenteral routes of transmiss ion, as we l l as the precautions with blood trans-fus ions ; Renal osteodystrophy seems to have a number of causes i n the pat ient with rena l f a i l u r e , inc lud ing impaired absorption of calcium i n the i n t e s t i n e , secondary hyperpara-thyroidi sm, abnormal metabolism of Vitamin D, a c i d o s i s , and c e r t a i n i n h i b i t o r s of bone c a l c i f i c a t i o n c i r c u l a t i n g i n the blood. Bone disease frequently develops and often progresses i n pa t i ent s , even when treated with per iod ic d i a l y s i s . Uremic neuropathy, which was a serious problem i n the f i r s t few years of maintenance d i a l y s i s therapy, has 3 A , Blumberg and K. Giger , Le t t e r to the E d i t o r r e . Hepa t i t i s and Hemodialysis , New England Journal of Medicine, v o l ; CCXXCIII, no. 1 2 , (September 1 7 , 1 9 7 0 ) , pp, 6 5 7 - 6 5 8 . D, Kim, et a l « , "Renal Osteodystrophy i n the Course of Per iod ic D i a l y s i s for Chronic Uremia," Transactions  American Society for A r t i f i c i a l Internal Organs, v o l , XIV, ( 1 9 6 8 ) , pp; 3 6 7 ! - 3 7 1 . 14 been shown to be preventable by adequate d i a l y s i s ; Tenckhoff a f te r an extensive study of the problem report s , " I n s t i t u t i o n of adequate d i a l y s i s before motor neuropathy has developed w i l l prevent t h i s serious compl icat ion. I f neuropathy develops or progresses i n pat ients maintained on d i a l y s i s , the amount of d i a l y s i s i s inadequate and treatment 5 should be i n t e n s i f i e d " ; Hypertension has continued to be a problem i n many pat ients undergoing maintenance hemodialysis . The use of antihypertensive drugs, r e s t r i c t i o n of d ie tary intake of s a l t and water, and u l t r a f i l t r a t i o n during d i a l y s i s have produced s a t i s f ac tory re su l t s i n many pa t i en t s . B i l a t e r a l nephrectomy has been recommended, however, i n pat ients with malignant hypertension or who have been unable to adequately 6 r e s t r i c t t h e i r d i e t . P e r i c a r d i t i s develops l a te i n severe uremia and can be reversed with adequate d i a l y s i s . When p e r i c a r d i t i s i s seen i n pat ients already on a maintenance d i a l y s i s program, 5 H, Tenckhoff, R . H , Jebsen, and J . C. Honet, "The E f f e c t of Long Term D i a l y s i s Treatment on the Course of Uremic Neuropathy," Transactions American Society fo r  A r t i f i c i a l Internal" Organs, v o l . XIII . (1967). pp; 58 - 6 l . 6 G. Onest i , et a l . , " B i l a t e r a l Nephrectomy for Control of Hypertension i n Uremia," Transactions American  Society fo r A r t i f i c i a l Internal Organs, v o l i XIV, (1968). PP. 361 - 366; 15 7 the treatment should be increased i n frequency or dura t ion . Congestive heart f a i l u r e develops as a r e s u l t of s a l t and water intake or from f a i l u r e to remove adequate amounts by d i a l y s i s i Long standing hypertension i s also impl i ca ted . Control of hypertension and blood volume usua l ly r e su l t s i n 8 r e s o l u t i o n of t h i s problem. Sexual problems may be both p h y s i o l o g i c a l and p sycho log ica l • Many women have cessat ion of menses with uremia, and many men have los s of l i b i d o and may be impotent; With i n s t i t u t i o n of regular d i a l y s i s and with general improve-9 ment i n hea l th , these problems are sometimes reso lved ; I n f e r t i l i t y i s the usual r u l e , though there have been a few successful pregnancies when the husband was the pa t ient and two unsuccessful ones among women pat ients i n the Seatt le program• P r u r i t i s and insomnia are also common problems for the uremic p a t i e n t . D i a l y s i s may re l i eve the symptoms, but i n some cases i t does not ; The cause i s not wel l understood. 7 Constantine Hampers and Eugene Schupak, Long Term  Hemodialysis , New Yorkj Grune and Stra t ton , 1967» PP; a o " 81. 8 Jerry Pendras and G. St inson, The Hemodialysis  Manual. Sea t t l e , 1969, Sect ion X I i ; p ; l i 9 C. F . Gutch and Martha Stoner, Review of Hemodialysis  for Nurses and D i a l y s i s Personnel. Saint Louist The C. V . Mosby Company, 1971, p i 151• P h y s i o l o g i c a l Problems Related to the D i a l y s i s Procedure Complications occurr ing during the d i a l y s i s 10 procedure are wel l ou t l ined by Pendras and St inson; They are : Bleeding r e s u l t i n g from any source but worsened by the need fo r ant icoagula t ion during the procedure; acute hyper- tens ion r e s u l t i n g from volume overload, anxiety , or the d i s e q u i l i b r i u m syndrome; h;,hypo tens ion and shock r e s u l t i n g from excessive antihypertensive drug therapy; fever caused by i n f e c t i o n , pyrogenic reac t ion , acute b a c t e r i a l contamina-t i o n of the blood c i r c u i t , gross b a c t e r i a l contamination of the d ia lysa te c i r c u i t or d ia lysate temperature above normal; nausea and vomiting whose common causes are hypotension, hypertension, d i a l y s i s d i s equ i l ib r ium syndrome, anxiety , headache, drug reac t ion or excessive calcium or magnesium i n the d i a ly sa te ; headache usua l ly caused by d i a l y s i s d i s e q u i l i b r i u m syndrome, hypertension, or anxiety; cardiac  arrhythmia caused by hypotension, hypokalemia, excess ively low hematocrit , cardiac disease; chest pa in commonly caused by angina pec tor i s or embolism of blood c l o t or a i r ; muscle  cramps caused by rapid sodium and water removal; rest lessness caused by anxiety and s u b c l i n i c a l motor neuropathy; Shortness  of breath caused by volume overload or pulmonary or a i r embolus; convulsions caused by hypertension, water i n t o x i c a -10 Jerry Pendras and G. St inson, The Hemodialysis  Manual, Sea t t l e , 1969. Section: X. 17 t i o n , d i a l y s i s d i s equ i l ib r ium syndrome or chemical abnormali-t i e s i Problems with C i r c u l a t i o n Access There are two major types of c i r c u l a t i o n access for the hemodialysis p a t i e n t : (1) the S i l a s t i c - T e f l o n cannula, sometimes c a l l e d the Scribner Shunt or the external A-V 11 shunt, and (2) the subcutaneous ar ter ia l -venous f i s t u l a ; Access to the c i r c u l a t i o n with the S i l a s t i c - T e f l o n cannula i s accomplished by clamping the external tubing and separating i t so that d i r e c t access i s obtained into the ar tery and v e i n . Access to the c i r c u l a t i o n with the subcutaneous f i s t u l a i s by puncture with 14- - 16 gauge needles. The S i l a s t i c - T e f l o n cannula can become disconnected or c l o t i The surrounding t i s sue may become infected or b leed . Excessive a c t i v i t y i n v o l v i n g the extremity must be 12 avoided; The subcutaneous arterio-venous f i s t u l a has fewer complicat ions , but greater s k i l l i s required to do the punctures to obtain c i r c u l a t i o n access; A study by Achad of the subcutaneous f i s t u l a i n t h i r t y - t h r e e home hemodialysis pat ients drew the fo l lowing 11 Jerry Pendras and G. St inson, The Hemodialysis  Manual. Sea t t l e , 19&9, Sect ion V I . 12 Martha Read and Mary Mol l i son , "External A r t e r i o -venous Shunts ," American Journal of Nursing, v o l ; LXXII, no. 1, (January, 1972), ppi 81 - 85; conclus ions . "Although the subcutaneous ar ter ia l -venous f i s t u l a remains f a r from i d e a l as a permanent access route to the blood supply, our experience indicates that i t may be success fu l ly employed i n home d i a l y s i s , and that i t has general advantages over the previous ly used S i l a s t i c - T e f l o n 1 3 cannulae•" I I . SOCIAL-PSYCHOLOGICAL FACTORS OF THE HOME HEMODIALYSIS PATIENT Reporting the re su l t s of a study of nine pat ients being d ia lyzed i n a research oriented h o s p i t a l un i t Shea states that the emotional reac t ion to the need for chronic d i a l y s i s may represent the greatest obstacle to successful 14 r e h a b i l i t a t i o n i She describes these react ions as consis-t i n g mostly of i r r i t a b i l i t y , apprehension, insomnia, res t les sness , and anx ie ty i She also reports d ie tary i n d i s c r e t i o n and unnecessary trauma to cannulas. Wright, reported on 12 pat ients undergoing hemo-13 A . Achad, at a l . , "Subcutaneous Arter ia l-Venous F i s t u l a i n Home Hemodialys is , " Transactions American Society for A r t i f i c i a l Internal"Organs, v o l ; XVI. (1970), pp; 280 - 283; 14 E i l e e n Shea, et a l « , "Hemodialysis for Chronic Renal Fa i lure - Psychologica l Cons iderat ions , " Annals of  Interna l Medicine, v o l . LXII I , no; 3, (March, 1965), pp; 558 - 563. 19 15 d i a l y s i s i n a community d i a l y s i s center i n 1965. They l i s t e d some of the stresses of pat ients as (1) ac tua l or threatened losses which included parts of body funct ion , loss of membership i n groups, f a i l u r e of plans or ventures, changes i n way of l i f e or l i v i n g , los s of home, possessions or f i n a n c i a l s tatus , and loss of job or occupation, (2) i n -jury or threat of i n j u r y , (3) f r u s t r a t i o n i n dr ives or d e r i v a t i v e s ! They note denia l as the ch ie f psychologica l defense i n t h i s group of pa t i en t s . Norton described pat ients i n the Seatt le program i n 1967 to be r e l a t i v e l y l i t t l e d i s turbed, as a whole, by the treatment, which he a t t r ibuted to the massive support for pat ients which was provided by the unique arrangement of s e rv ice s , both f i n a n c i a l and medical , provided by that 16 community; He states that much more i s required for support of these pat ients than what i s o r d i n a r i l y thought of as medical supervis ion and advice . Harry Si Abram reports i n 1968 h i s conclusion about 17 the psycho-soc ia l aspects of d i a l y s i s ; He sees the 15 \5 Robert G. Wright, P. Sand and G. L i v i n g s t o n , "Psycho l o g i c a l Stress During Hemodialysis for Chronic Renal F a i l u r e , " Annals of Interna l Medicine, v o l ; LXIV, (March, 1966), ppi 611 - 621; 1.6 Charles Norton, "Chronic Hemodialysis as a Medical and S o c i a l Experiment," Annals of Internal M e d i c i n e ; , v o l . LXVI (June, 1967), ppi 1267 - 1276. 17 Harry S. Abram, The P s y c h i a t r i s t , the Treatment of Chronic Renal F a i l u r e , and the Prolongation of L i f e , " American Journal of Psychia try , v o l i CXXIV, no; 10, ( A p r i l , 1968), pp 1351 - 1358; 20 dependency-independency c o n f l i c t as the most s i g n i f i c a n t s tress on the p a t i e n t . He states that although severe emotional disturbances are not a usual problem i n most renal un i t s with a s e l ec t ion process and a treatment-oriented atmosphere, problems of r e h a b i l i t a t i o n and adjustment require a t t ent ion and understanding; Using the MMPI to study a group of pa t ient s , Short described denia l as an e f fec t ive mental mechanism used by 18 hemodialysis pat ients to cope with t h e i r s t resses . He emphasizes the inef fect iveness of t h i s mechanism for the family and community and the inappropriateness of i t for the nurses and the doctors • DeNour l i s t s some of the stresses he observed as the threat of death, lo s s of plannable future , dependency on machines, lo s s of body functions and changes i n body 19 image, f r u s t r a t i o n of d r ive s , and delay of g r a t i f i c a t i o n ; . He s tresses the need f o r supportive psycholog ica l care ; I I I , ASSESSMENT TOOLS AND PERIODIC EVALUATION SCHEMES FOR MAINTENANCE HEMODIALYSIS PATIENTS No complete assessment to i d e n t i f y the needs of 18 M, J , Short and W, P. Wilson, "Roles of Denial i n Chronic Hemodialys is , " Archives of General Psychia try , v o l , XX, ( A p r i l , 1969), PP 433 - 437. 19 A , K, DeNour, "Psychotherapy with Pat ients on Chronic Hemodialys i s , " B r i t i s h Journal of Psychiatry , v o l , CXVI, (February, 1970), pp 207 - 215; 21 the chronic home hemodialysis pat ient was found i n the l i t e r a t u r e ; Kennedy developed a scor ing system for r a t i n g pat ients medical ly i n order to e s t ab l i sh a prognosis . He 20 did not attempt a psycho-socia l or r e h a b i l i t a t i o n assessment. Potter used Kennedy*s assessment scheme to rate pat ients i n h i s program and also had the nurse rate the 21 pat ient i n terms of h i s occupational r e h a b i l i t a t i o n ; An assessment of pat ients i n an i n - h o s p i t a l program i n New York was done i n 1965 us ing such parameters as days spent i n h o s p i t a l ; weekly a c t i v i t y records , n i g h t l y s leeping time, and three areas of psycho-socia l adjustment. These were (1) compliance to and acceptance of the therapeu-t i c regimen of maintenance hemodialysis , (2) response to and achievement i n construct ive a c t i v i t y , and (3) maturity and 22 extent of interpersonal r e l a t i o n s h i p s . MacElveen, i n her doctora l d i s s e r t a t i o n , explored the r e l a t i o n s h i p of cooperation between home d i a l y s i s 20 A . G. Kennedy, "A Scoring System for Assessing Pat ients on Regular D i a l y s i s , " Lancet, v o l ; I, ( A p r i l 5» 1969), ppi 702 - 707i 21 D. J . Potter and G. M. Nickos, "Assessment of Pat ients Undergoing Home Maintenance D i a l y s i s , " Arizona  Medicine, v o l i XXVII, ( A p r i l , 1970), pp. 76 - 79. 22 E . A . Friedman, et a l . , "Psychosocia l Adjustment to Maintenance Hemodialys is , " New York Journal of Medicine, v o l i LXX, (March, 1970), ppi 629 - 637. 22 p a t i e n t , h i s partner , and nurse to adherence to the medical 23 regimen, t o t a l a c t i v i t y and morale. She studied twenty-one pa t ient s , which was the populat ion of that center, and found s i g n i f i c a n t cor re la t ions i n these areas; IV. GENERAL ASSESSMENT TOOLS Bonney and Rothberg describe a nurs ing evaluat ion form which was developed to i d e n t i f y and measure the needs 24 of c h r o n i c a l l y disabled persons for Nursing s e rv i ce ; The t o o l i s d iv ided into three sec t ions : Sect ion I i s designed to r e f l e c t the p a t i e n t ' s phys i ca l cond i t ion , Sect ion II h i s l e v e l of phys i ca l and p h y s i o l o g i c a l funct ioning , Sect ion III i s a de sc r ip t ion of pat ient behavior; Each of the three sect ions y i e l d a numerical score; These scores, t i t l e d X, Y, and Z scores, are p lo t ted on 3 p a r a l l e l scales of 0 - 10, They may then be used r e l a t i v e to each other to determine the p a t i e n t ' s areas of strength and weaknesses; R e l i a b i l i t y and v a l i d i t y studies were not reported, Williams reports the development of the Pat ient P r o f i l e which was designed to measure the nursing needs of 23 P a t r i c i a MacElveen, Exp lora t ion of the Cooperative  Tr i ad i n the Inves t igat ion of Home D i a l y s i s Pat ient Outcomes, Unpublished Doctoral D i s s e r t a t i o n , U n i v e r s i t y of Colorado, 1971• 24 V i r g i n i a Bonney and June Rothberg, Nursing  Diagnosis and Therapy: An Instrument for Eva luat ion and Measurement, New York: The National League for Nursing, 19611 23 25 pa t i en t s . I t i s based on seven basic needst Nourishment, E l i m i n a t i o n , Rest, Exerc i se , Soc i a l In terac t ion , Safety, and Therapy. Di rec t observations of the pat ient i s the suggested mode of data gather ing; The observer rates the p a t i e n t ' s phys i ca l a b i l i t y to meet h i s needs as (a) adequate, (b) l e s s than adequate, or (c) inadequate. He then rates the p a t i e n t ' s response or a t t i tude to meeting h i s needs as (a) Pos i t ive Interes t , which i s a goa l -d i rected a c t i v i t y toward meeting h i s needs; (b) Passive response, which i s behavior l a c k i n g i n in te re s t but w i l l i n g to go along with others act ions or suggestions; or (c) Extreme response which i s pat ient behavior extremely pos i t ive or negative toward the meeting of needs, A numerical dependency score was obtained by r a t i n g each of the fourteen items on a continuum of 0 - 10, This allowed a t o t a l score range of 140 - completely s e l f -s u f f i c i e n t to 0 - completely dependent, In terra ter r e l i a b i l i t y c o - e f f i c i e n t s of ;85 were reportedly obtained when pa i r s of nurses on eight d i f f e rent hosp i t a l uni t s rated a t o t a l of 241 p a t i e n t s , Aydelotte describes a test of pat ient welfare which consis t s of three measures: (1) Number of days i n h o s p i t a l , number of fever days, number of post-operative days and doses of n a r c o t i c s , analges ics , or sedatives , (2) Scaled measures: P a t i e n t ' s mental a t t i t u d e , p a t i e n t ' s phys ica l independence, 25 Mary Edna Wil l iams, "The Pat ient P r o f i l e , " Nursing Research, v o l . IX, no. 3, (Summer, i960), pp. 122 TW. s p e c i a l aspects of independence, p a t i e n t ' s m o b i l i t y , p a t i e n t ' s sk in cond i t ion , p a t i e n t ' s opinion of nurs ing care given to him, and phys ic i ans ' evaluat ion of p a t i e n t ' s condi t ion and progress, (3) Sampling measures of per cent of time spent i n bed, i n cha i r , up and i n communication and 26 occupied l e i s u r e ; A "poor" to "good" scale was used for the scaled measures; A committee of experts wrote graduated behavioral statements between these categories and the r a te r placed the pat ient i n the appropriate place on the sca le . The r e l i a b i l i t y c o e f f i c i e n t of the mental a t t i tude r a t i n g form was reported to be ;73 based on 85 pa i r s of independent r a t i n g s . R e l i a b i l i t y of the other measures was not reported. Face v a l i d i t y and s i g n i f i c a n t c o r r e l a t i o n between the item of Phys ic ians ' evaluat ion of p a t i e n t ' s condi t ion and most of the other s ix ind ices of pat ient welfare were the tes t s of v a l i d i t y . A pat ient r a t i n g scale was developed by Rich and Dent designed to measure changes i n a t t i tudes toward 27 pa t i en t s ; S i x x c r i t e r i a were selected for the instrument: (1) t e s t - re te s t r e l i a b i l i t y , (2) change i n response when a pat ient changed, (3) i n t e r r a t e r agreement, (4) v a r i a t i o n i n 26 Myrtle K i t c h e l l Aydelotte , "The Use of Pat ient Welfare as a C r i t e r i o n Measure," Nursing Research, v o l . XI, no. 1, (Winter, 1962), pp. 10 - lW. 27 Rosemary Rich and James K. Dent, "Pat ient Rating S c a l e , " Nursing Research, v o l . XI , no. 1, (Winter, 1962), pp. 10 - 14. 25 response across pa t ient s , (5) d imensional i ty , eg . , the degree to which the item-iis pos i t ive or negative, and (6) c l a r i t y of meaning. The o r i g i n a l r a t i n g scale used 28 terms or ad ject ives such as: cooperative, grouchy, hard to please, a model pa t i ent , and asked the r a te r to check whether t h i s described the pat ient very w e l l , somewhat, a l i t t l e , not at a l l , or no op in ion . The scale was revised to include only 22 items when the o r i g i n a l t o o l f a i l e d to meet the s ix c r i t e r i a . The second scale had good s p l i t - h a l f r e l i a b i l i t y and t e s t - re te s t r e l i a b i l i t y . In terra ter agreement was low. Schoening and Iverson discussed three years of 28 experience and rev i s ions of the Kenney Sel f-care eva luat ion . I t u t i l i z e s a 5-point r a t i n g scale to measure s ix cate-gories of s e l f care ; Zero, one and three and four are p r e c i s e l y defined categories ; Two i s a "catch a l l " cate-gory used to contain those pat ients who do not f i t the other four precise d e f i n i t i o n s . The authors state t h e i r data shows pat ients do not spend any greater length of time i n t h i s category than i n the neighboring ones and f e e l the expanded middle por t ion on the scale has increased i t s value and made i t eas ier to use; Summary of the Review of the L i te ra ture In summary, the l i t e r a t u r e on hemodialysis has 28 Herbert Schoening and Iver Iverson, "Numerical Scoring of Self-Care E v a l u a t i o n , " Archives of Phys ica l  Medicine, v o l . XLIX, no; 1, (January, 1968), pp. 221 - 229. been examined to e lucidate those p h y s i o l o g i c a l and s o c i a l -psycholog ica l parameters considered important i n judging the wel l -being and needs of the hemodialysis pa t i en t . Various too l s used to evaluate hemodialysis pat ients have been examinedi No completely s a t i s f ac tory t o o l was found i n the l i t e r a t u r e . Other types of general pat ient welfare r a t i n g systems were reviewed. Problems with obta ining r e l i a b i l i t y and v a l i d i t y were notedA Various methods of scor ing were exploredi CHAPTER III METHODOLOGY I . OVERVIEW The fo l lowing procedure was used to develop an instrument to rate pat ients on t h e i r l e v e l of wel l being and need for fol low up care . (1) The l i t e r a t u r e on hemo-d i a l y s i s was explored to i d e n t i f y s p e c i f i c factors sa id to be important i n determining the p a t i e n t ' s l e v e l of wel l be ing . (2) Pat ient records were examined to e l i c i t p e r t i n -ent v a r i a b l e s . (3) D i a l y s i s nurses were given a questionnaire i n which they stated which factors they used to rate a pat ient wel l funct ioning or poorly funct ion ing . (4) Nine pat ients were interviewed using a semi-structured interview schedule to obtain t h e i r perception of t h e i r needs and l e v e l of wel l be ing. (5) A pre l iminary t o o l was constructed and submitted to a panel of experts for v a l i d a t i o n . The f i n a l instrument was tested for r e l i a b i l i t y using four pa i r s of nurses assessing f ive pat ients each. I I . SAMPLE The nine semi-structured interviews were done on 3 pat ients rated by the s t a f f as having made a poor adjust-ment to home hemodialysis , three having made an adequate adjustment, and three having made an exce l lent adjustment. 27 28 For r e l i a b i l i t y t e s t ing 20 pat ients were selected from a group who met the fo l lowing c r i t e r i a : over 16 years of age, l i v i n g i n King or Snohomish Counties , Eng l i sh speaking, on d i a l y s i s at l ea s t s i x months, and not scheduled fo r a transplant wi th in s ix months of the assessment. The pat ient sample consisted of e ight females and twelve males. The p a t i e n t s 1 consent to pa r t i c ipa te i n the study was obtained. A l l pat ients had received t h e i r home d i a l y s i s t r a i n i n g at the Northwest Kidney Center, Sea t t l e , Washington. I I I . CONSTRUCTION OF THE PRELIMINARY TOOL Data Gathering Variables e lucidated i n the hemodialysis l i t e r a t u r e are l i s t e d i n Chapter II - Review of the L i t e r a t u r e . Each of these var iab les were considered for i n c l u s i o n i n the t o o l . A l i s t of pat ient problems and parameters looked at by the s t a f f were obtained by examining twenty pat ient records . These were found to be almost i d e n t i c a l to the problems out l ined i n the l i t e r a t u r e . Nine pat ients were interviewed using a semi-structured interview schedule; Three of these pat ients had been rated by the s t a f f as having made a poor adjustment to maintenance home hemodialysis , three having made a f a i r adjustment, and three having made an exce l lent adjustment; Data from these interviews were examined and a l i s t 29 of problems and problem statements was compiled. Common problems shared by pat ients rated as poor and not seen i n pat ients of the other ra t ings were e s p e c i a l l y noted. The most s t r i k i n g di f ferences among these groups of pat ients were i n the fo l lowing areas* 1.. Time Spent i n Productive A c t i v i t y . A l l three pat ients rated as poor adjustors by the s t a f f were un-employed and disclaimed productive a c t i v i t y except for one or two hours d a i l y . In contrast , a l l three pat ients rated exce l lent by the s t a f f were employed f u l l time and claimed normal l e v e l s of a c t i v i t y . Of those pat ients rated as f a i r adjustors one was employed f u l l time, one part time and the t h i r d claimed a f u l l schedule of housework, 2, General Outlook and Relat ionship with Friends and Family, The three pat ients i n the poorly adjusted category made such statements as these i "I guess I'm hard to l i v e with now, I'm i n a bad mood most of the t ime , " "I get up i n the morning l o t s of times and wonder why I bother , " "I hate being on the machine and can ' t seem to get my mind on anything e l s e . " "This i s a h e l l of a way to l i v e . " "Nobody understands what you have to go through." "People don' t l i k e to bother with you when you're s i c k . " "I don't know anyone my own age and I can ' t meet anyone because they would think I was a freak on t h i s machine." "People expect too much of you and don't r e a l i z e you're s i c k . " In contrast pat ients i n the adequate categories made these statements s "I 'm down i n the dumps sometimes but I think t h a t ' s just natura l when you have something l i k e t h i s ; " "I 'm just thankful to God that they have the machine•" "Our f r iends have been wonderful, I don't know what we would do without them;" "My wife s t i l l gets pre t ty nervous but we manage and there are l o t s of good t imes . " "When things don' t go wel l with the machine we kind of get tense and y e l l at each other but ^mostly we get along O . K . " The three pat ients i n the exce l lent category made these and other statementss "Of course i f I had a choice, I wouldn't go on d i a l y s i s but since I don ' t , I just regard i t l i k e brushing my teeth - something you have to do - and I go on about my bus iness ; " "We just don' t l e t i t bother us - i t ' s one of those things you have to f i n d time for i n your l i f e and t h a t ' s t h a t . " "My family i s great - they p i t c h i n and help and are always there p u l l i n g for me." "We've had to give up some things we enjoyed together but we have been even c loser as a family since I s tarted on d i a l y s i s - we r e a l i z e d how unpredictable l i f e can be ; " "Everyone, my boss, fami ly , f r iends have been t e r r i f i c - they want to do everything they can for us - we r e a l l y don' t need anything but i t ' s nice to know they ' re t h e r e , " A questionnaire was submitted to eleven d i a l y s i s nurses . Analys i s of t h e i r statements concerning pat ients produced the fo l lowing l i s t : 31 Table 1 Well Adjusted Pat ient Factors Leading to Good Pat ient Rating No; of nurses who included t h i s item (11 nurses t o t a l ) Opt imis t ic and cheerful 8 Determined to l earn - h igh ly motivated 7 Leads act ive l i f e - community invo lve-ment, outside in te re s t 6 Well occupied l e i s u r e 3 Adequate d i a l y s i s 3 Infrequent backup d i a l y s i s . 1 Works f u l l time 3 Good r e l a t i o n s h i p with helper -exce l lent family support 8 Table 2 Poorly Adjusted Pat ient Factors Leading to Poor Pat ient Rating No, of nurses who included t h i s item (11 nurses to ta l ) Hi s tory of problem with c i r c u l a t i o n access 3 General medical complications 3 Fa i lure to d ia lyze or fol low d ie t according to prescr ibed regimen 5 Does not work 1 No outside in tere s t s 6 Does not a c t i v e l y par t i c ipa te i n own care 4 Spouse or helper r e l a t i o n s h i p poor 7 Anxiety-tens ion-fear 2 Frequent backup d i a l y s i s 2 32 Rationale for Inc lus ion of and Exc lus ion of Items i n the Tool Mater ia l from the four sources, the hemodialysis l i t e r a t u r e review, pat ient record examination, d i a l y s i s nurses 1 questionnaire and the nine pat ient interviews were combined and considered for i n c l u s i o n i n the t o o l . The c r i t e r i a used for i n c l u s i o n were: (1) a r a t i n g can be obtained economically, (2) a r a t i n g can be obtained with l i t t l e inconvenience to the pa t ient , (3) a r a t i n g can be obtained q u i c k l y , (4) a r a t i n g may be obtained by an object-ive q u a n t i f i c a t i o n of an item or by a perception of the pa t i ent , and (5) a r a t i n g can be made on the basis of a s tra ight-forward quest ion with no hidden meaning. A l l items on the p h y s i o l o g i c a l assessment were included because these problems were discussed i n the d i a l y s i s l i t e r a t u r e and were found to be frequently mentioned i n the pat ient records . Many of them were mentioned by the pat ients as symptoms which they experienced. Wherever the question i s not one which can be se t t l ed by measurement or observation, the p a t i e n t ' s perception of the problem i s sought. For example the item on sexual funct ioning seeks to determine i f the pat ient perceives a problem i n t h i s area rather than to determine any actua l state of sexual potency. In some instances much more accurate measurements of p h y s i o l o g i c a l funct ioning are ava i lab le but they do not meet the c r i t e r i a of being economical and convenient for the pa t i en t . For example, a nerve conduction time i s a 33 far more sens i t ive measure of degree of neuropathy than the assessment provided for by the t o o l . The nerve conduction time, however, i s expensive and uncomfortable for the pat ient and i s u sua l ly ava i l ab le only at large medical centers . The items under miscellaneous symptoms i n the t o o l , that i s : i t c h i n g , nausea and vomiting, headache, d i zz ine s s , muscle cramps, cons t ipa t ion , c h i l l s and fever , are not quant i f ied because the degree to which the symptom i s a problem seems to depend more on the p a t i e n t ' s perception than the actua l number of times i t occurs• The t echnica l a b i l i t y assessment would doubtless be much more accurate i f d i r e c t observations were made and recorded as i s done when a p a t i e n t ' s a b i l i t y i s being assessed i n h i s home d i a l y s i s t r a i n i n g p e r i o d . Again, t h i s i s extremely time consuming and expensive; The b r i e f assessment b u i l t in to the t o o l i s designed to show the p a t i e n t ' s perception of h i s a b i l i t y as wel l as the object ive number of times he a c t u a l l y encounters problems or must c a l l for a s s i s tance . The soc i a l -p sycho log ica l adjustment of the pat ient i s f a r more d i f f i c u l t to measure than the p h y s i o l o g i c a l or the t echn ica l adjustment because the determination of what const i tutes good, adequate, and poor soc i a l -p sycho log ica l adjustment i s not so r e a d i l y apparent; Hours spent i n productive a c t i v i t y was noted i n the pa t ient interviews as being a f ac tor which was c l e a r l y d i f f e r e n t i n those pat ients who had been rated as poorly 34 adapted by the s t a f f and those who had been rated as w e l l -adapted. Also i t seemed advisable to determine i f there had been a d i s t i n c t change i n productive a c t i v i t y since t h e i r i l l n e s s ; No outside in teres t s had been mentioned by s ix of the nurses when asked to describe the poorly adjusted pa t i en t ; Six nurses used the terms "community involvement", and "many outside i n t e r e s t s " , to describe the wel l adjusted p a t i e n t . Role changes and fee l ings df ro le lo s s ihad been mentioned i n the l i t e r a t u r e . I t was decided to simply ask the pat ient h i s perception of h i s a b i l i t y to funct ion as a husband, fa ther , wife , mother, or family member since measur-ing ro le change and fee l ings of ro le lo s s i n depth would require extensive probing with the p a t i e n t . Ident i fy ing some fee l ings of ro le changes was f e l t to be adequate i n assessing the p a t i e n t ' s needs for fol low up care . Statements of general fee l ings made by the pat ients i n the poor categories and the exce l lent categories were so c h a r a c t e r i s t i c a l l y d i f f e r e n t that t h i s dimension seemed to be very important to measure i n assessing the p a t i e n t ' s l e v e l of we l l being and need for fo l low up care . Several statements i n the soc i a l -p sycho log ica l assessment were compiled from the actual statements made by pa t i en t s . The two items mentioned most often by the nurses i n r a t i n g a pat ient wel l funct ioning were an a t t i t u d i n a l statement of op t imi s t i c and cheer fu l , and good family 35 r e l a t i o n s h i p s and support; E ight of the eleven nurses named these two f ac to r s ; Also these general fee l ings of: : being i n a good or bad mood, of f e e l i n g accepted or re jected by others and of having people to help and support them were mentioned frequently by pat ients i n a l l three categories of adjustment. Nine questions on the assessment form are designed to rate the pat ient on t h i s kind of dimension. Fa i lu re to fo l low medical regimen had been mentioned by 5 nurses as a f ac tor i n r a t i n g the poorly adjusted p a t i e n t ; This dimension i s measured by the p h y s i o l o g i c a l data but one question asking the pat ient how comfortably he f e l t he could l i v e with h i s r e s t r i c t i o n s was included i n the s o c i a l -psycholog ica l assessment, IV. THE RATING SCALE A three point numerical r a t i n g scale was devised with no weighting of i n d i v i d u a l items; A l l measurements and pat ient perceptions were d iv ided into the categories of exce l l en t , adequate, and poor designated re spec t ive ly by the numbers one, two, and three . A r a t i n g of one would indicate the better adapted pat ient and three the poorer adapted one, A maximum t o t a l score of 144 would indicate the pat ient with the greatest number of needs and a minimum t o t a l score of 47 would indica te the pat ient with the l ea s t number of needs. However any item r e c e i v i n g a three score would indicate an area i n which the pat ient had some need fo r fo l low up care or further assessment; 36 V. VALIDATION The pre l iminary t o o l was submitted to a panel of f ive experts which included four d i a l y s i s nurses whose experience i n d i a l y s i s nurs ing ranged from f ive to nine years and one phys ic ian who had worked i n t e n s i v e l y with d i a l y s i s pat ients for s ix years ; Each of these experts agreed that the t o o l had content v a l i d i t y . V I . PRE-TEST A pre-tes t was conducted on two pat ients to determine communication d i f f i c u l t i e s with any of the quest ions ; No problems were encountered, V I I . RELIABILITY TESTING Pour pa i r s of nurses used the va l ida ted t o o l to separately assess f i ve pat ients each; The r a t i n g scale was explained v e r b a l l y as wel l as i n wr i t ing to each nurse; The two-ta i led te s t was chosen to tes t the independence of the t o o l from the evaluator . A .05 l e v e l of s ign i f i cance was used. CHAPTER IV ANALYSIS OF THE DATA I . VALIDITY TESTING The pre l iminary t o o l was submitted to f i ve experts; four d i a l y s i s nurses whose experience i n d i a l y s i s ranged from f ive to nine years and one phys ic ian who had worked intens-i v e l y with d i a l y s i s pat ients fo r s ix years . The experts agreed that the t o o l would measure important di f ferences i n pat ients which would be s u f f i c i e n t to determine t h e i r need for fo l low up care . One question was modified at the suggestion of two of the nurses i This was regarding p a r t i c i p a t i o n i n s o c i a l or community organizations and a c t i v i t i e s which asked the pat ient to describe h i s p a r t i c i p a t i o n as often, occas iona l ly or r a r e l y ; I t was suggested that t h i s be a l tered to ask whether h i s p a r t i c i p a t i o n was about the same as, l e s s than, or much l e s s than before h i s need for hemodialysis . This was f e l t to be more meaningful than the o r i g i n a l wording because some pa t i en t s ' lack of p a r t i c i p a t i o n would be a l i f e s ty le rather than an e f fect of t h e i r i l l n e s s , I I . RELIABILITY TESTING Four pa i r s of nurses separately assessed each of f ive p a t i e n t s i A t o t a l of twenty pat ients were assessed; 37 38 The two t a i l e d *fe test was used to test the hypothesis that the assessment t o o l provides a r a t i n g which i s independent of the evaluator . I t was s i g n i f i c a n t at the .05 l e v e l . Table 3 Paired Nurses Scores of Functioning Leve l of Pat ient and Differences i n Nurse Scores Pat ient Number Score 3 Nurse A Score Nurse B Difference A - B 1 64 64 0 2 85 80 5 3 52 52 0 i 4 74 75 -1 5 69 73 -4 6 58 58 0 7 65 66 -1 8 106 108 -2 9 66 67 -1 10 80 80 0 11 59 59 0 12 82 83 - 1 . 13 61 61 0 14 51 51 o • 15 6 l 63 -2 16 55 56 -1 17 87 83 4 18 62 ; 62' 0 19 66 67 -1 20 88 89 -1 39 Table 4 S t a t i s t i c a l Treatment The Test : I f the assessment too l i s independent of the evaluator then the dif ference A - B - > 0 , but i f the t o o l i s sens i t ive to in te rpre ta -t i o n by an i n d i v i d u a l nurse, then |:A - B\ ""^9 constant. The Hypothesis : The mean of the dif ference = x A -}B = 0 . I f t h i s i s t rue , then the too l i s independ-ent of the evaluator . The Samples The number of data po ints , was 20, The mean x was 0 . 3 0 0 . The Standard devia t ion 5 * W£>-s 1 . 9 2 2 , The standard devia t ion of the means of the samples, JL*— 5 _ , i s given by S _ = = 0.430 The var iable -k. for the two-ta i led =<t test i s given by: * - y - « / t o . Where for t h i s hypothesis /\& = 0 4 . = -0.300 = _ 0 . 6 9 8 Inser t ing the above values we obtain 0.430 From the table for the two-ta i led *f tes t with = 20 and at the . 0 5 l e v e l *fc i s given by: ± ( 1 9 0 . 0 2 5 ) = 2 . 0 9 3 The re su l t i s i l l u s t r a t e d by the fo l lowing : 40 te s t s t a t i s t i c = -0.698 Since the ca lcula ted value of f a l l s wel l wi th in the acceptable range the hypothesis that the t o o l i s independent of the evaluator i s v e r i f i e d . I I I . ANALYSIS OF RESULTS OF ASSESSMENT The mean score: of the twenty pat ients was 69.5• Twelve of the twenty pat ients had scores below the mean while the remaining eight pat ients had scores above the mean. The age range of the twelve pat ients scor ing below the mean was 17 years to 60 years . The mean age of t h i s group was 4l years . The age range of the eight pat ients scor ing above the mean was 21 years to 6l years . The mean age of t h i s group was 43.5 years . 41 The lower scor ing group had a range of months of d i a l y s i s from 6 months to 71 months. The mean length of d i a l y s i s of t h i s group was 26.5 months. The higher scoring group had been on d i a l y s i s from 8 months to 68 months. The mean length of d i a l y s i s was 31 months. This indica tes that age and length of d i a l y s i s were not factors which accounted for di f ferences i n the two groups. The above information i s i l l u s t r a t e d i n Figures 1, 2, and 3. The d i s t r i b u t i o n of low scores between the two groups of pat ients on the p r e - d i a l y s i s c rea t in ine , BUN, Serum albumin, 24 hour urine volume and usual p r e - d i a l y s i s blood pressure was quite uniform. For example, 50 per cent of those eight pat ients whose t o t a l scores f e l l above the mean scored a number one on the item of i n t r a d i a l y s i s weight ga in , while only 40 per cent of those twelve pat ients whose t o t a l scores f e l l below the mean scored a number one on t h i s i tem. This ind ica tes that the di f ferences measured i n pat ients d id not f a l l i n the category of Adequacy of d i a l y s i s and n u t r i t i o n -a l status i n t h i s p a r t i c u l a r group of pa t i en t s . C i r c u l a t i o n access problems accounted for some dif ference i n the two groups. Of the twelve lower scor ing pa t ient s , 25 per cent had problems with c i r c u l a t i o n access contras t ing with 62 per cent of the eight higher scor ing pa t i en t s . The d i s t r i b u t i o n of low and high scores on the item of Bone Status, both i n X-ray evidence and c l i n i c a l symptoms, was not s i g n i f i c a n t l y d i f f e rent between the two groups. 42 Number of Scores 10 -| 9 8 7 6 5 4 3 2 _ ,:1 —i—\—!— | ' | i | 1 1 1 1 1 1 \ * I 1 2 3 4 5 6^  7 8 9 10 Group Figure 1 Nurse A Scores Grouped in Interval Size of 1U«4 For t h i s set of scores the mean i s 6 9 . 55 ; the variance i s 194,2475I and the standard dev ia t ion i s 13.93727, The group s ize i s 14,4 4 3 Number of Scores 10 „ 9 8 7 6 5 4 3 2 H 1 1 2 3 8 4_J_L_ 9 10 Group Figure 2 Nurse B Scores Grouped in Interval Size of 14«U For t h i s set of scores the mean i s 69„85; the variance i s 189•>3275; and the standard deviation i s 13.75963. The group size i s l 4 0 4 . 44 Number of Scores 10 -9 -8 -7 „ 6 _ 5 -4 _ 3 -2 _ 1 -' I 1 1 M 1 I 2 8 9 10 Group Figure 3 Mean Scores Grouped In Interval Size of 14.U In t h i s set the mean i s 69.7; the variance i s 190.91; and the standard devia t ion i s 13,81702. The group s ize i s 14.4, 45 Cardiac symptoms accounted for a dif ference i n the groups. Eleven of the twelve pat ients scor ing below the mean disclaimed shortness of breath and chest pain while a l l eight of the other group claimed some shortness of breath and four of the eight claimed moderate to severe chest pa in . Eleven of the twelve low scorers had no evidence of neuropathy as judged by the three items included i n that assessment. Six of the other eight pat ients had moderate impairment and one had severe impairment. D i s s a t i s f a c t i o n with sexual funct ioning was c h a r a c t e r i s t i c of 75 per cent of the higher scoring pat ients , while only 25 per cent of the lower scor ing pat ients had t h i s complaint. Response to the s leeping patterns item showed 58 per cent of the twelve lower scoring pat ients had no d i f f i c u l t y s leeping while 42 per cent had moderate d i f f i c u l t y . Only 25 per cent of the higher scoring pat ients had no d i f f i c u l t y s leeping while 50 per cent had moderate d i f f i c u l t y , and 25 ;? per cent had severe d i f f i c u l t y . The d i s t r i b u t i o n of high and low responses on the miscellaneous symptoms was not s i g n i f i c a n t l y d i f f e rent between the two groups. Of the f ive items on the technica l a b i l i t y assess-ment, only two showed s i g n i f i c a n t di f ferences i n the two groups. These were the number of technic ian . : .consultations required fo r machine malfunctions and the degree of conf id-ence the pat ient had i n h i s own a b i l i t y to handle d i a l y s i s procedures. E ighty per cent of the twelve lower scor ing pat ients r a r e l y required technic ian consul ta t ion while 75 per cent of the eight higher scoring pat ients required technic ian consul ta t ion three to s ix times year ly and over. One hundred per cent of the twelve lower scorers declared a f e e l i n g of confidence i n handling d i a l y s i s procedures. Only 2 5 per cent of the higher scorers claimed to f e e l confident while 5 0 per cent f e l t somewhat uneasy and the other 2 5 per cent f e l t uneasy most of the time. The soc i a l -p sycho log ica l data accounted for the greatest dif ference between the two groups of pa t i ent s . Of the twelve pat ients scor ing le s s than the mean, 100 per cent had productive a c t i v i t y over three hours d a i l y and 8 0 per cent of these had productive a c t i v i t y over s ix hours d a i l y . Of the eight higher scor ing pat ients only 37 per cent had productive a c t i v i t y more than three hours d a i l y . Family re l a t ionsh ip s were said to be harmonious and s a t i s f y i n g by 8 0 per cent of the 12 lower scorers . Seventy-five per cent of the higher scorers stated family r e l a t ionsh ip s were marked by tension and misunderstandings or were severely d i s s a t i s f y i n g . Recreat ional a c t i v i t i e s were sa id to be enjoyed often by 9 0 per cent of the twelve lower scorers while the remaining 10 per cent enjoyed them occa s iona l ly . T h i r t y -seven and a h a l f per cent of the higher scorers enjoyed these a c t i v i t i e s of ten, while 2 5 per cent did occas iona l ly , and the remaining 3 7 • 5 per cent claimed to r a r e l y enjoy 47 rec rea t iona l a c t i v i t i e s . A l l of the twelve lower scorers sa id they had people to turn to for help when they needed i t while only 60 per cent of the higher scorers f e l t t h i s way. Moderate anxiety on the part of family members as a consequence of the p a t i e n t ' s d i a l y s i s was sa id to be present by 25 per cent of the lower scor ing pa t i en t s . Seventy-five per cent of the higher scor ing pat ients claimed moderate to severe anxiety on the part of family members. When the pat ients were asked about t h e i r perceived a b i l i t y to funct ion i n t h e i r family r o l e s , 92 per cent of the lower scorers f e l t they could funct ion as wel l or bet ter than before t h e i r i l l n e s s . S ixty per cent of the higher scorers f e l t l e s s able to funct ion i n t h e i r normal ro le s than p r i o r to t h e i r i l l n e s s . A l l of the pat ients i n the lower scoring group f e l t genera l ly op t imi s t i c i n spite of t h e i r r e s t r i c t i o n s . Seventy per cent of the higher scorers , however, chose to say they f e l t down i n the dumps and somewhat f e a r f u l about the future as t h e i r response to t h i s i tem. A l l of the pat ients i n the lower scor ing group said they f e l t comfortable about d i scuss ing t h e i r d i a l y s i s when meeting new people or t a l k i n g with acquaintances i f the subject should a r i s e . Two of the eight higher scorers sa id they f e l t somewhat uncomfortable doing so and one sa id he would prefer to keep i t a secret as h i s i l l n e s s made him f e e l unacceptable to others . 48 Comparison of percentage scores on selected var iab les i s shown i n Figure 4. Sleep with no d i f f i c u l t y Harmonious Family Relat ionships Confident handling d i a l y s i s procedure Recreat ional A c t i v i t i e s Enjoyed Often Productive A c t i v i t y Over 6 hours/day x y X y X y X y X y ' 1 M > M 1 ' \ * \ > \ \ \ \ l -4— 10 20 30 4o 50 6o 70 8o 90 100 Per Cent Figure 4 Comparison of Percentage Scores on Selected Variables of Group x (Tota l score f e l l below the mean) and Group y ( t o t a l score f e l l above the mean) CHAPTER V SUMMARY, CONCLUSIONS, AND RESEARCH IMPLICATIONS I , SUMMARY The purpose of t h i s study was to construct a nurs-ing assessment too l to i d e n t i f y the home hemodialysis p a t i e n t ' s l e v e l of funct ioning and need for fol low up care . Items which would rate the pat ient on p h y s i o l o g i c a l and soc i a l -p sycho log i ca l var iab les as wel l as t echnica l a b i l i t i e s were inc luded . Data about those var iab les important to measure were obtained from several sources; review of hemodialysis l i t e r a -ture , examination of pat ient records, questionnaire to d i a l y s i s nurses and semi-structured interviews with nine pa t i en t s . Items were included i f a r a t i n g met the c r i t e r i a of being obtained economically, q u i c k l y , o b j e c t i v e l y , d i r e c t l y , and with l i t t l e inconvenience to the p a t i e n t . A three point numerical r a t i n g scale was used with no weighting of i n d i v i d u a l items. A one score ind ica tes the most adequate l e v e l of funct ioning and a three score the l ea s t adequate. Indiv idua l scores are t a l l i e d to obtain a maximum t o t a l score of 144 i n d i c a t i n g the pat ient with the greatest needs or a minimum score of 4? i n d i c a t i n g the pat ient with the l ea s t needs. 49 50 Five d i a l y s i s experts inc lud ing four nurses and one phys ic ian examined the t o o l . Face v a l i d i t y was estab-l i s h e d fo r determining the adequacy of the p a t i e n t ' s l e v e l of funct ioning and h i s need for fol low up care se rv ice s . A r e l i a b i l i t y test was conducted with four pa i r s of nurses using the va l ida ted t o o l to assess twenty pa t i ent s . R e l i a b i l i t y was v e r i f i e d when the two t a i l e d •ir'test, used to te s t whether or not the ra t ings obtained with the assessment t o o l were independent of the nurse obtaining the r a t i n g , was s i g n i f i c a n t at the . 0 5 l e v e l . Analys i s of the t o t a l scores showed a mean score of 69»5« Twelve pat ients * t o t a l scores f e l l below the mean while e ight pat ients * t o t a l scores f e l l above the mean. These two groups of pat ients were compared on the several dimensions within the t o o l . The greatest areas of dif ference were i n the soc i a l -p sycho log ica l var iab les and i n two areas of t echn ica l assessment. Differences i n p h y s i o l o g i c a l var iab le s as a whole were not as pronounced. Pat ients whose scores f e l l above the mean tended to have l e s s con-fidence i n t h e i r a b i l i t y to handle d i a l y s i s procedures, require more t echnica l backing, have more problems with c i r c u l a t i o n access, sleep less w e l l , have fee l ings of ro le dysfunction, engage i n l e s s productive a c t i v i t y , and enjoy rec rea t iona l a c t i v i t i e s les s often than the group whose t o t a l scores f e l l below the mean. D i s t r i b u t i o n of scores on blood chemistr ies , twenty-four hour urine volume, bone status , i n t r a d i a l y s i s weight ga in , incidence of blood leaks , and f a i l u r e of d i a l y z e r to tes t out was not s i g n i f i c a n t l y d i f f e rent i n the two groups of pa t i en t s . I I . CONCLUSIONS An assessment t o o l has been developed with good r e l i a b i l i t y and face v a l i d i t y . More extensive v a l i d i t y t e s t i n g i s required to demonstrate i f the categories into which the pat ient f a l l s , i n d i c a t i n g h i s need fo r fol low up care are appropriate i n most cases. More work needs to be done to el iminate non-relevant items, that i s items which do not contribute to showing di f ferences i n the pa t i ent s . I f t h i s were done then, t h e o r e t i c a l l y , the mean could be made to represent the average pat ient and greater than one standard devia t ion from the mean could be used as the c r i t e r i a for r a t i n g a p a t i e n t ' s adjustment as exce l lent or very poor. Since only one pat ient score among the higher scores i n t h i s sample was outside one standard dev ia t ion , there was not an adequate base from which to do t h i s . Assessing pat ients with the t o o l required about twenty minutes per pa t i en t . Pat ients were receptive to the questions and answered them c a r e f u l l y and thought fu l ly . Often the pat ient gave more information than was requested. This ind ica tes the t o o l has good p o s s i b i l i t i e s for expansion into a comprehensive assessment t o o l from which a nursing care plan could be developed; 52 I I I . RESEARCH IMPLICATIONS Now that r e l i a b i l i t y of t h i s assessment t o o l has been v e r i f i e d i t should be used to assess a s t a t i s t i c a l l y s i g n i f i c a n t sample of hemodialysis pa t i en t s . From t h i s assessment the most important var iab les could be i d e n t i f i e d . V a l i d i t y t e s t i n g i s a problem since there i s no independent standard against which to measure the pat ient r a t i n g s . There i s l i t t l e d i f f i c u l t y , however, i n e s t ab l i sh ing by reports of the s ta f f , those pat ients who f a l l at the extreme ends of the continuum of poor adjustment to exce l lent adjustment. I f deviat ions from the mean are a good c r i t e r i a then t h i s test of v a l i d i t y would be use-f u l . One could perhaps then assume that the t o o l would be equal ly sens i t ive i n the middle areas. This assessment t o o l i s not intended, i n i t s present form, to be used as an instrument from which nurs-ing care plans are developed. I t i s intended as an instrument to a s s i s t the nurse i n evaluat ing which pat ients most need further assessment and fol low up care. Much more work i s necessary i n the areas of weighting i n d i v i d u a l items and excluding non-relevant items. BIBLIOGRAPHY 53 BIBLIOGRAPHY A. BOOKS Bonney, V i r g i n i a , and June Rothberg. Nursing Diagnosis and  T h e r a p y » An Instrument for Eva luat ion and Measure- ment, New Yorkt The National League for Nursing. 19o3. Gutch, C, F , and Martha Stoner. Review of Hemodialysis f o r Nurses and D i a l y s i s Personnel . Saint L o u i s » The C. V. Mosby Company, 1971. Hampers, Constantine and Eugene Schupak. Long-Term Hemo- d i a l y s i s . New York: Grune and Stra t ton , 1967. L i t t l e , Dolores E . and Doris Carneva l i . Nursing Care Plann- i n g . P h i l a d e l p h i a : J . B . L i p p i n c o t t Company, 1969. Pendras, Jerry and G. S t inson. The Hemodialysis Manual. Sea t t l e , 1969. B. PERIODICALS A b e l , J . J . , L . G. Rowntree and B. B. Turner. "On the Re-moval of D i f fu s ib l e Substances from C i r c u l a t i n g Blood by Means of D i a l y s i s , " Transactions Assoc ia t ion  American Phys ic ians , (1913) pp 28 - 51, " Abram, Harry S, "The P s y c h i a t r i s t , the Treatment of Chronic Renal F a i l u r e , and the Prolongation of L i f e , " American Journal of Psychiatry , v o l . CXXIV, no. 10, ( A p r i l , 1968), pp 1251 - 1358. Achad, A . , M, Haimov, A . Hering and E . Schupak. "Subcu-taneous Arter ia l-Venous F i s t u l a i n Home Hemodialys is , " Transactions American Society for A r t i f i c i a l Internal  Organs, v o l . XVI. (1970) PP 280 - 283. Aydelot te , Myrtle K i t c h e l l . "The Use of Pat ient Welfare as a C r i t e r i o n Measure," Nursing Research, v o l . XI, no. 1, (Winter, 1962), pp 10 - 14. B a i l l o d , R. A . , et a l "Overnight Hemodialysis i n the Home," Proceedings of the European D i a l y s i s and Transplant Assoc ia t ion , v o l . I I , (1965), p , 99. 54 55 Blagg, C. R. , R. 0 . Hickman, J . W, Eschbach, and B. H. Scr ibner . "Home H e m o d i a l y s i s « Six Years* Exper ience , " New  England Journal of Medicine, v o l . CCXXCII, (Nov-ember, 1970), pp 1126 - 1131. Blumberg, A . and K. Giger, Le t t e r to the E d i t o r re Hepa-t i t i s and Hemodialysis, New England Journal of  Medicine, v o l . CCXXCVII, no. 12, (September 17, 1970), pp 657 - 658. Brand, L . and N. I . Kamarita, "Adapting to Long-Term Hemo-D i a l y s i s , " American Journal of Nursing, v o l . 66, no. 8, (August, 1966), pp 1778 - 1781. Compty, C. M . , D. McDade and M. Kaye, "Anemia and Iron Requirements of Pat ients Treated by Maintenance Hemodialys i s , " Transactions American Society for  A r t i f i c i a l Internal Organs, v o l , XIV, (1968), pp 426 - 432. Cummings, Jonathon W, "Hemodialysis : The Pressures and How Pat ients Respond," American Journal of Nursing, v o l . 70, no. 1, (January, 1970), pp 70 - 76. C u r t i s , K . , et a l . "Hemodialysis i n the Home," Transactions American Society fo r A r t i f i c i a l Internal Organs, v o l . XI, (1965), p . 7. DeNour, A . K. "Psychotherapy with Pat ients on Chronic Hemodialys is , " B r i t i s h Journal of Psychiatry , v o l . CXVI, (February, 1970), pp 207 - 215. DeNour, A . K . , J . S h a l t i e l and J . W. Czoczkes. "Emotional Reactions of Pat ients on Chronic Hemodialys is , " Psychosomatic Medicine, v o l . XXX, no. 5, (September-October, 1968), pp 521 - 533. Eschbach, Joseph W., et a l . "Unattended Overnight Home Hemo-d i a l y s i s , " Transactions of the American Society for  A r t i f i c i a l Internal Organs, v o l . XII , (1966), p . 346. Friedman, E . A . , et a l . "Psychosocial Adjustment to Maintenance Hemodialys i s , " New York Journal of Medicine, v o l . LXX, (March, 1970), pp 629 - 637. Gaspard, Nancy. "The Family of the Pat ient with Long Term I l l n e s s , " Nursing C l i n i c s of North America, v o l . 5, no. 1, (March, 1970) pp 77 - 84. Hampers, C . 1 L . , J . P . M e r r i l l and E l i zabe th Cameron. "Hemo-d i a l y s i s i n the Home - A Family A f f a i r , " Transactions American Society for A r t i f i c i a l Internal Organs, v o l . XI , (1965), p . 3. 56 Kennedy, A , C. "A Scoring System for Assessing Pat ients on Regular D i a l y s i s , " Lancet, v o l . I, ( A p r i l 5, 1969), pp 701 - 702. Kim, D . , et a l . "Renal Osteodystrophy i n Course of Per iod ic D i a l y s i s f o r Chronic Uremia," Transactions American  Society for Internal Organs, v o l . XIV, (1968), pp 367 - 371. K o l f f , W. J . " F i r s t C l i n i c a l Experience with the A r t i f i c i a l K idney , " Annals of Internal Medicine, v o l . LXII , <1965), p . 608. Lewis, L . "Thi s I Believe About the Nursing Process - Key to Care , " Nursing Outlook, v o l . XVI, no. 5, (May, 1968), pp 26 - 29. McCain, Faye. "Nursing by Assessment Not I n t u i t i o n , " American Journal of Nursing, v o l . 65, no. 4, ( A p r i l , 1965), pp 82 - 84. Meldrum, Maxine, Joydel le Wolfrom and Mi l ton Rubice. "The Impact of Chronic Hemodialysis upon the Socio-Economics of a Veteran Pat ient Group," Journal of  Chronic Diseases, v o l . XXI, (1968), pp 37 - 52. Norton, Charles E . "Chronic Hemodialysis as a Medical and S o c i a l Experiment," Annals of Internal Medicine, v o l . LXVI, (June, 1967), PP 1267 - 1276. Ones t i , G i , et a l . " B i l a t e r a l Nephrectomy for Control of Hypertension i n Uremia," Transactions American  Society fo r Internal Organs, v o l . XIV. (1968). PP 361 - 366. Pendras, J . P . and Terrance P o l l a r d . "Eight Years Experience with a Community D i a l y s i s Center , " Transactions of . the American Society fo r A r t i f i c i a l Internal Organs, (1970) p . 77. Potter , D. J . and G. M, Nickos ; "Assessment of Pat ients Undergoing Home Maintenance D i a l y s i s , " Arizona  Medicine, v o l ; XXVII, ( A p r i l , 1970), pp 76 - 79. Quinton, Wayne, David D i l l a r d and Belding Scr ibner . "Cannu-l a t i o n of Blood Vessels for Prolonged Hemodialys i s , " Transactions American Society for A r t i f i c i a l Internal  Organs, v o l . VI . (I960), p . 10k. Read, Martha and Mary M a l l i s o n . "External Arteriovenous Shunts," American Journal of Nursing, v o l . 72, no. 1, (January, 1972), p ; 81. R ich , Rosemary and James K. Dent. "Pat ient Rating Sca l e , " Nursing Research, v o l . XI, no. 3, (Summer, 1962), pp 163 - 171. 57 Sand, P a t r i c i a , G. L iv ings ton , and R. G, Wright. "Psycho-S o c i a l Assessment of Candidates for a Hemodialysis Program," Annals of Internal Medicine, v o l . LXIV, (March, 1966), pp 602 - 610; Schoening, Herbert and Iver A . Iverson. "Numerical Scoring of Self-Care Status: A Study of the Kenney Se l f -Care E v a l u a t i o n , " Archives of Phys ica l Medicine, v o l . XLIX, no; 1, (January, 1968), pp 221 - 229; Scr ibner , Belding H . , et a l . "The Treatment of Chronic Uremia by Means of Intermittent Hemodialysis : A Prel iminary Report , " Transactions American Society  f o r A r t i f i c i a l Internal Organs, v o l . VI . (I960), p . 114. Shaldon, Stanely and M. D. Contab. "Independence i n Mainten-ance Hemodialys is , " The Lancet, v o l . : , l , (March, 1968), pp 520 - 523; Shambraugh, P h i l i p W., et a l . "Hemodialysis i n the Home -Emotional Impact on the Spouse," Transactions  American Society for A r t i f i c i a l Internal Organs, vol . . XIII , (1967), PP 41 - 45. Shea, E i l e e n , et a l . "Hemodialysis for Chronic Renal Fa i lure -Psychologica l Cons iderat ions , " Annals of Internal  Medicine, v o l . LXII I , no. 3, (March, 1965), PP 588 -Short, M. J . and W. P . Wilson. "Roles of Denial i n phronic Hemodialys i s , " Archives of General Psychia t ry , v o l ; XX, ( A p r i l , 1969), PP 433 - 437; Simms, Laura . "The C l i n i c a l Nurse S p e c i a l i s t : An Experiment," Nursing Outlook, v o l . XXXII, (August, 1965), pp 26 -W, Stewart, Betty M. "Hemodialysis i n the Home: The Value of House Ca l l s by Tra in ing Personnel , " Nursing C l i n i c s  of North America, v o l . 4, (September, 1969), pp 431 -W 2 T Tenckhoff, H . , R. H . Jebsen, and J . C. Honet. "The Ef fec t of Long-Term D i a l y s i s Treatment on the Course of Uremic Neuropathy," Transactions American Society for  Internal Organs, v o l . XIII . (1967), PP 53 - 61. Wil l iams, Mary Edna. "The Pat ient P r o f i l e , " Nursing Research, v o l . IX, no. 3, (Summer, i960), pp 122 - 124. Wood, S; "Hemodialysis i n the Home," Canadian Nurse, vo l .65 , no. 4, ( A p r i l , 1969), PP 42 - 44. 58 Wright, Robert G i , P . Sand and G. L i v i n g s t o n ; "Psycholog ica l Stress During Hemodialysis for Chronic Renal F a i l u r e , " Annals of Internal Medicine, v o l . LXIV, (March, 1966), pp 611 - 621. Zimmerman, Donna S tu lg i s and Carol Gohrke. "The Goal-Directed Approach: I t does Work," American Journal of Nursing, v o l . 70, no; 2, (February, 1970), pp 306 - 310. C. UNPUBLISHED REPORTS Aydelot te , M. K. "Nursing Care of Pat ients Undergoing Hemodialysis ! A Study Report , " Unpublished report presented to the Thi rd Annual Veterans' Adminis trat ion Workshop on Chronic Hemodialysis, Chicago, A p r i l , 1967• Blagg, Christopher R. "Need for Home Follow Up Care , " Un-published report to Kidney Advisory Committee, Washington - Alaska Regional Medical Program, 1972; Computer Pr int-Out National D i a l y s i s Regis try , Research Triangle Park, North Caro l ina , January, 1972. MacElveen, P a t r i c i a M; Explora t ion of the Cooperative Tr i ad  i n the Invest igat ion of Home D i a l y s i s Pat ient Outcomes. Unpublished Doctoral D i s s e r t a t i o n , Univer-s i t y of Colorado, 1971i Smith, Dorothy. Manual for the Use of the Nursing His tory T o o l . Thi rd Revis ion , College of Nursing, Univer s i ty of F l o r i d a , G a i n s v i l l e , F l o r i d a , 1971. (Mimeographed) APPENDIX A NURSING ASSESSMENT FORM FOR MAINTENANCE HOME HEMODIALYSIS PATIENT 59 NURSING ASSESSMENT FORM FOR MAINTENANCE HOME HEMODIALYSIS PATIENT I . P h y s i o l o g i c a l Assessment Adequacy of D i a l y s i s and N u t r i t i o n a l Status P r e - d i a l y s i s Creat inine (1) Female: below 9; Male: below 10 (2) Female: 9 - 12.9; Male: 10 - 13.9 (3) Female: 13 or over: Male: 14 or over P r e - d i a l y s i s BUN (1) below 80 (2) 80 - 100 (3) over 100 Serum Albumin (1) 3.7 Gms f> or above (2) 3.0 - 3.6 (3) 2.9 or below 24 Hour Urine Volume (1) > 500 cc per day (2) 250 - 500 cc per day (3) <£ 250 cc per day I n t r a d i a l y s i s Weight Gain Dry weight <. 65 Kg. Maximum = 2 - 2 | Kg. Dry weight 65 - 80 Kg. Maximum = 2 5 - 3 Kg. Dry weight 80 - 100 Kg. Maximum = 3 - 3? Kg (1) r a r e l y exceeds maximum (2) exceeds about 50% of the time (3) usua l ly exceeds maximum Average P r e - d i a l y s i s Blood Pressure (1) s y s t o l i c below l60: d i a s t o l i c below 90 (2) s y s t o l i c 160 - 190j d i a s t o l i c 90 - 100 (3) s y s t o l i c above 190; d i a s t o l i c above 100 C i r c u l a t i o n Access Subcutaneous F i s t u l a Puncture (1) < ^ §5$ of time do extra puncture for access (2) £5 - 50% of time do one or more extra puncture (3) ^> 50$ of time do one or more extra punctures 60 61 F i s t u l a Flow (1) A r t e r i a l or venous pressure monitor alarm (unrelated to blood pressure) oecurs during d i a l y s i s l e s s than 25% of the time (2) occurs 25 to 50% of the time (3) occurs greater than 50% of the time or the necess i ty of keeping the arm completely immobile to prevent alarm Externa l A-V Shunt Number of in fec t ions over past s ix months (1) none (2) one to two mild in fec t ions cleared with t rea t -ment (3) more than two mild in fec t ions or any severe i n f e c t i o n which resul ted i n r e v i s i o n or permanent sk in damage i n cannula area Bleeding Episodes (1) no bleeding i n l a s t s ix months (2) chronic small l eak ing of blood at e x i t s i t e s or one to two episodes of moderate blood leaking at ex i t s i t e s or very small hematoma formation i n the l a s t s ix months (3) 3 or more moderate blood leaking episodes or any severe bleed or large hematoma formation i n the l a s t s ix months C l o t t i n g Episodes (1) 0 - 1 i n l a s t s ix months (2) 2 - 4 i n l a s t s ix months (3) more than 4 or any one which resul ted i n r e v i s i o n of shunt Bone Status X-Ray Evidence (1) mild to moderate demineral izat ion (2) severe demineral izat ion (3) sub-per iostea l eros ion and/or vascular c a l c i f i -cat ion plus any degree of deminera l izat ion C l i n i c a l Evidence (1) no bone pain (2) bone pain (3) pa tho log ica l fracture within past year 62 Anemia and Cardiac Status 1 2 3 Hematocrit (1) average ^> 25% (2) 20 - 25% (3) 25% Shortness of Breath and/or Fatigue (1) no s . o . b . or fat igue with normal a c t i v i t y (2) moderate s . o . b . or fatigue with normal ac t iv i ty (3) severe s . o . b . or fatigue with normal a c t i v i t y Cardiac Symptoms (1) no chest pa in or i r r e g u l a r i t y (except occass-i o n a l skipped beat) (2) chest pain on exert ion - mild to moderate (3) severe chest pain on exert ion and/or taking d i g i t a l i s or quinidine Neuropathy (1) no neuro log ica l symptoms (2) numbness i n feet (3) interference with walking Exam for D i s t a l Motor Nerves (1) p u l l down toes with d i f f i c u l t y (2) toes p u l l down e a s i l y (3) pat ient cannot extend toes Exam for Proximal Motor Nerves (1) stands on toes e a s i l y (2) stands on toes with d i f f i c u l t y (3) unable to stand on toes Sexual Functioning (1) s a t i s f i e d with degree of funct ion (2) not opt imal ly s a t i s f i e d - some d i f f i c u l t y (3) very d i s s a t i s f i e d with degree of funct ion Menstrual Cycle (1) normal fo r age (2) i r r e g u l a r menstruation: moderate to excessive bleeding; or absence of menses i f bothersome . to pat ient (3) severe or prolonged bleeding with menses 63 2 Sleep Patterns (1) no d i f f i c u l t y s leeping (2) some or moderate d i f f i c u l t y s leeping (3) severe d i f f i c u l t y s leeping so that functions poorly next day Miscellaneous Symptoms I tching (1) absent (2) moderate (3) severe Nausea and/or Vomiting (1) r a r e l y (2) moderately often (3) severe and troublesome Headache (1) mild to moderate and occurs r a r e l y (2) moderate to severe occurs occas iona l ly (3) severe and occurs often Dizz iness or Feel ings of Di sequi l ibr ium (1) absent (2) occasional (3) often Muscle Cramps (1) r a r e l y (2) i n t e r m i t t e n t l y (3) often Const ipat ion or Diarrhea ( c i r c l e one or both) (1) ,.; r a r e l y (2) i n t e r m i t t e n t l y (3) often C h i l l s and Fever (1) r a r e l y (2) i n t e r m i t t e n t l y (3) often 64 I I . Technical A b i l i t y Assessment Machine malfunction Requiring Technician consul ta t ion (1) occurs r a r e l y or about 3 times year ly (2) occurs between 3 and 6 times year ly (3) occurs frequently - more than 6 times year ly Rebuilding D ia lyzer because of Fa i lure to Test Out (1) r a r e l y necessary (2) often but less than 25% of the time (3) over 25% of the time Incidence of Blood Leaks on F i r s t D i a l y s i s a f ter Rebuilding (1) rare (2) occurs but les s than 25% of time (3) over 25% of the time Feel Frustrated over Technical Problems (1) only r a r e l y (2) moderately often (3) most of the time Degree of Confidence i n A b i l i t y to Handle Procedures (1) very confident (2) confident most of the time but somewhat uneasy on occasion (3) uneasy most of the time I I I . Psychosocial Assessment Hours Spent i n Productive A c t i v i t y (employment, house-work, s tudies , e tc . ) (1) 6 or more hours d a i l y (2) 3 - 6 hours (3) 0 - 3 hours Present Work Level i s (1) same as before my i l l n e s s (2) s l i g h t l y le s s than before (3) much l e s s than before Enjoy Recreat ional A c t i v i t i e s (1) often (2) occas iona l ly (3) r a r e l y 65 Which of these Statements Most Describe Your Own Feelings? (1) Though I would rather I d id not need d i a l y s i s I am glad that i t i s ava i l ab le and f e e l i t i s a l l worth while to have t h i s chance to extend my l i f e . (2) I f i n d myself wondering f a i r l y often i f I made the r i g h t choice i n deciding to prolong my l i f e by d i a l y s i s . ( 3 ) I regret my dec i s ion to s t a r t on the kidney and f e e l my l i f e i s no longer worth whi le . How does D i a l y s i s Affect Your Family? (1) have accepted (2) moderately anxious ( 3 ) very anxious When Meeting New People or Ta lk ing with Acquaintances (1) I make no e f fo r t to br ing up my i l l n e s s but am very comfortable t a l k i n g about i t i f the subject should a r i s e . (2) I f e e l somewhat uncomfortable i n d i scuss ing my i l l n e s s . ( 3 ) My i l l n e s s makes me f e e l d i f f e rent and not accepted by others and I prefer to keep i t a secre t . I Find that I can Live Within My Present Res t r i c t ions (such as d i e t , regular d i a l y s i s , reduced phys ica l a c t i v i t y ) Comfortably. (1) yes (2) about h a l f the time ( 3 ) no Which of These Statements Best Describe Your Own Feel ings? (1) People who are on d i a l y s i s should do the most they can for themselves but accept help from family and f r iends when needed. (2) People who are on d i a l y s i s have a r i g h t to expect that others w i l l help them. ( 3 ) People who are on d i a l y s i s should not be expected to take care of themselves. 66 Par t i c ipa te i n Soc ia l or Community Organizations and ' A c t i v i t i e s (1) about the same as before (2) l e s s than before (3) much le s s than before Feel Able to Function as a Husband, Wife, Mother, Father, Family Member, ( c i r c l e those that apply) (1) as wel l or bet ter than before my i l l n e s s (2) not as wel l as before my i l l n e s s (3) poorly Family Relat ionships are (1) for the most par t , harmonious and s a t i s f y i n g (2) marked by frequent misunderstandings and tension - are le s s than s a t i s f y i n g (3) completely disrupted, antagonist ic or severely d i s s a t i s f y i n g Relat ionships with Friends and Relat ives are (1) good and mutually s a t i s f y i n g (2) somewhat s trained since my i l l n e s s (3) very s tra ined or absent or disharmonious There are People to turn to for Help when I Need i t (1) yes (2) not always (3) no Which of these Statements Most Describes Your Feelings About Your S i tua t ion (1) Though I know I w i l l continue to have to l i v e with r e s t r i c t i o n I enjoy l i f e and greet most days with reasonable optimism. (2) Knowing that I must continue to l i v e with r e s t r i c t i o n s I f i n d myself f ea r fu l about the future and f i n d les s enjoyment i n l i f e . (3) Knowing that I must continue to l i v e with r e s t r i c t i o n s I f i n d myself down i n the dumps much of the time with l i t t l e enjoyment i n l i f e Which of these Statements Best Describes the Way You Feel Most of the Time? (1) Reasonably comfortable and at peace with myself and others (2) Uncomfortable and somewhat down i n the dumps or i n a bad mood (3) Very uncomfortable, angry and annoyed or very down i n the dumps and depressed In General I Find My L i f e (1) s a t i s f y i n g (2) l e s s than s a t i s f y i n g (3) very d i s s a t i s f y i n g APPENDIX B NURSES* QUESTIONNAIRE 68 NURSES' QUESTIONNAIRE The purpose of t h i s exercise i s to e l i c i t i n f o r -mation from those who work c lo se ly with d i a l y s i s pat ients regarding t h e i r reasons for p lac ing a pat ient i n the cate-gories of funct ioning wel l or funct ioning poor ly . Try to think of those things which are r e a l l y the most important i n formulating your op in ion ; These can include medical reasons, s o c i a l or psychologica l reasons or anything which you think subs t an t i a l ly contributes to the pat ients being placed i n the category. 1. Think of one pat ient you know wel l whom you f e e l i s poorly adjusted or doing poorly in .genera l on d i a l y s i s . Describe t h i s person b r i e f l y (do not mention h i s or her name) and state why you f e e l t h i s person i s doing poorly rather than w e l l ; 2, Think of one pat ient you know wel l whom you see as doing very wel l on d i a l y s i s . Please describe t h i s pat ient and your fee l ings about why you f e e l he should be rated as doing w e l l . 69 APPENDIX C SEMI-STRUCTURED PATIENT INTERVIEW SCHEDULE 70 SBMI-STRUCTURED PATIENT INTERVIEW SCHBDULB General Introduct ion I am mostly interes ted today i n f ind ing out from you which parts of your l i f e and heal th have been most af fected by your need for treatment on the a r t i f i c i a l kidney - that i s - what mostly seems to cause you trouble and what seems to make things eas ier for you. I have a few questions i n mind but f i r s t I would l i k e to hear from you whatever you f e e l l i k e t e l l i n g me so I make sure I f i n d out what i s r e a l l y important t o : you. Questions In what way i s your l i f e d i f f e rent now than i t was before you needed hemodialysis? Occupation, l e i su re a c t i v i t i e s , s leep, community involvement, family r e l a t i o n s h i p s , f r iendship c i r c l e s , e t c . How have these changes af fected the way you f e e l about your-s e l f or your l i f e ? How do you f e e l p h y s i c a l l y most of the time now? Emotionally? What things bother you the most about your present state? What things seem to help you the most? What s ingle improvement i n your present s i t u a t i o n would make l i f e on hemodialysis more to lerable to you? 71 APPENDIX D VALIDATION FORM 72 VALIDATION FORM Data derived from t h i s assessment form would be adequate to determine the r e l a t i v e state of wel l being of the mainten-ance home hemodialysis pat ient and would point out h i s need fo r fol low up care . I agree I agree but f e e l the fo l lowing changes should be made: I disagree for the fo l lowing reasons: Signature: 73 APPENDIX E INSTRUCTIONS TO NURSES PARTICIPATING IN THE RELIABILITY TESTING INSTRUCTIONS TO NURSES PARTICIPATING IN THE RELIABILITY TESTING The purpose of t h i s assessment t o o l i s to rate the pat ient on each item so that a t o t a l score w i l l r e f l e c t h i s need fo r fo l low up carei This t o o l i s not intended as a depth analys i s of a p a t i e n t ' s problems but only as a way of r e f l e c t i n g i n which areas he has the greatest needs as wel l as showing h i s r e l a t i v e l e v e l of funct ion ing . The pat ient has been t o l d that he w i l l be rated by two d i f f e rent nurses. The reason for t h i s i s to provide two scores on each pat ient so that the scores may be compared s t a t i s t i c a l l y to demonstrate whether or not the ra t ings pro-vided by the t o o l are independent of the person doing the r a t i n g . Please do not use any p r i o r knowledge you may have of a pat ient to answer the questions, but record the response the pat ient g ives . I f a pat ient waivers on the answer you may c l a r i f y fo r him, but, please have him make the f i n a l dec-i s i o n on the category. Each item has a choice of three responses numbered 1» 2 , , 3 , Please place a check under the appropriate number i n the column to the r i g h t opposite the item; I f the pat ient chooses the number two response to an item then place a check mark under the number two column opposite that i tem. In a l l cases the number one response i s designed to represent the bet ter l e v e l of funct ioning , the number three response the pooreri 75 76 The highest t o t a l score should r e f l e c t the pat ient with the greatest need for fo l low up care while the lowest t o t a l score should r e f l e c t the pat ient with the l e a s t need. 

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