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Symptoms, functioning, well-being, and general health perceptions of bone marrow transplant recipients Gue, Deborah Sutherland 1991

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SYMPTOMS, FUNCTIONING, WELL-BEING, AND GENERAL HEALTH PERCEPTIONS OF BONE MARROW TRANSPLANT RECIPIENTS By Deborah Sutherland Gue B.N., Dalhousie University, 1981 THESIS SUBMITTED IN PARTIAL FULFILLMENT THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA August 1991 © Deborah Sutherland Gue, 1991 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia Vancouver, Canada Date DE-6 (2/88) Abstract ThE r purpose of t h i s study was to address the need for knowledge about the impact of bone marrow transplantation (BMT) on the l i f e of the in d i v i d u a l following discharge from the h o s p i t a l . S p e c i f i c a l l y , symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions of BMT re c i p i e n t s were described. Furthermore, the re l a t i o n s h i p between these variables and time since BMT, and type of BMT was also explored. P a r t i c i p a n t s from an accessible population of indivi d u a l s who had t h e i r BMT i n one of two western Canadian hospitals completed the BMT Symptom Distress Inventory, the Sickness Impact P r o f i l e , the S o c i a l Adjustment Scale - S e l f Report, the C a n t r i l Self-Anchoring Scale, the P r o f i l e of Mood States, and the Demographic Information, I l l n e s s and Treatment History Data C o l l e c t i o n Guide. Symptoms were found to be a s i g n i f i c a n t feature of the post-BMT experience with regard to frequency and associated d i s t r e s s . Symptoms that were reported as occurring most frequently and having the greatest degree of associated d i s t r e s s f e l l into the categories of sexuality symptoms, miscellaneous problems, and j o i n t symptoms. Personal functioning appeared to be at a higher l e v e l than that of a comparison group of BMT r e c i p i e n t s , and at a lower l e v e l than that of a comparison group of renal transplant patients. A large percentage of respondents who described t h e i r usual roles as workers for pay, reported a favorable l e v e l of functioning i n t h i s area with approximately 90% of the group presently working. Total mood disturbance and other aspects of psychological distress/well-being were found to be a less f a v o r a b l e f e a t u r e of the post-BMT experi e n c e i n t h i s sample. BMT r e c i p i e n t s r a t e d t h e i r c u r r e n t h e a l t h and l i f e s a t i s f a c t i o n as lower than t h a t o f the average person and b e f o r e they were i l l and r e q u i r e d treatment; however, they showed a t r e n d toward a n t i c i p a t i o n o f a h i g h e r l e v e l o f h e a l t h and l i f e s a t i s f a c t i o n i n the f u t u r e . 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 r e l a t i o n s h i p between the p o s t -BMT f u n c t i o n i n g v a r i a b l e s and f o u r post-BMT time frame v a r i a b l e s was not demonstrated. However, t h e r e was 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 d i f f e r e n c e i n p s y c h o l o g i c a l d i s t r e s s / w e l l - b e i n g between the autologous and a l l o g e n e i c BMT r e c i p i e n t groups s u g g e s t i n g l e s s p s y c h o l o g i c a l d i s t r e s s i n the autologous BMT group. The f i n d i n g s were d i s c u s s e d i n r e l a t i o n t o the con c e p t u a l framework f o r the study, and oth e r r e s e a r c h f i n d i n g s . I m p l i c a t i o n s f o r n u r s i n g p r a c t i c e , n u r s i n g r e s e a r c h , and program development and r e s o u r c e a l l o c a t i o n were a l s o suggested. iv Table of Contents Abstract i i Table of Contents i v L i s t of Tables v i L i s t of Figures v i i i Acknowledgements ix CHAPTER ONE: Introduction Background to the Problem 1 Statement of the Problem 2 Purpose 2 Conceptual Framework 3 Research Questions 5 D e f i n i t i o n of Terms 6 Assumptions 8 Limitations 8 Significance of the Study 9 Overview of the Thesis Content 10 CHAPTER TWO: Review of Selected L i t e r a t u r e Introduction 11 Impact Of I l l n e s s And Treatment On Quality Of L i f e . . . . 11 Symptoms Following Bone Marrow Transplantation 13 Personal And Social/Role Functioning Following BMT.... 16 Psychological Distress/Well-Being Following BMT 17 General Health Perceptions Following BMT 19 Summary 20 CHAPTER THREE: Methodology Introduction 21 Research Design 21 Sampling Procedure 21 Data C o l l e c t i o n Instruments... 23 Data C o l l e c t i o n Procedure 31 Data Analysis 32 Protection of Human Rights 33 Summary 3 4 CHAPTER FOUR: Presentation and Discussion of the Findings Introduction 35 Ch a r a c t e r i s t i c s of the Sample 35 Findings. 38 Discussion of the Findings 44 Summary • • • 76 V CHAPTER FIVE: Summary, Conclusions, and Implications Introduction 79 Summary 79 Conclusions 80 Implications 82 References 88 Appendices 93 Appendix A: Summary of Post-BMT Symptoms I d e n t i f i e d from the Literature 94 Appendix B: P r o f i l e of Mood States (POMS) 96 Appendix C: C a n t r i l Self-Anchoring Scales for Level of Health and Level of L i f e S a t i s f a c t i o n . . . . . . . . 98 Appendix D: Sickness Impact P r o f i l e (SIP) 101 Appendix E: Soc i a l Adjustment Scale - S e l f Report (SAS-SR) 113 Appendix F: BMT Symptom Distress Inventory 120 Appendix G: Demographic Information, I l l n e s s and Treatment History Data C o l l e c t i o n Guide 125 Appendix H: Participant Information Letter 128 Appendix I: Participant Reminder Letter 131 Appendix J : Letters of Permission for the use of the P r o f i l e of Mood States, the Sickness Impact P r o f i l e , and the Social Adjustment Scale - Se l f Report 133 v i L i s t of Tables Table 1: R e l i a b i l i t y C o e f f i c i e n t s for Symptom Frequency Scale of the BMT Symptom Distress Inventory 25 Table 2: Demographic Ch a r a c t e r i s t i c s of BMT Recipients... 36 Table 3: I l l n e s s and Treatment Ch a r a c t e r i s t i c s of BMT Recipients 37 Table 4: Symptom Frequency Subscale Scores 39 Table 5: Symptoms: Most To Least Upsetting According To Mean Score. 40 Table 6: Personal Functioning as Measured by the Sickness Impact P r o f i l e 41 Table 7: Social/Role Functioning as Measured by the Soc i a l Adjustment Scale 42 Table 8: Psychological Distress/Well-Being as Measured by the P r o f i l e Of Mood States 43 Table 9: Perceived Level of Health as Measured by the C a n t r i l Self-Anchoring Scale 44 Table 10: Perceived L i f e S a t i s f a c t i o n as Measured by the C a n t r i l Self-Anchoring Scale 44 Table 11: Symptom Frequency Means of the Present Sample and a Comparison Sample .. . 50 Table 12: SIP Scores for the Present Sample and a Comparison Sample 53 Table 13: SAS-SR Scores for the Present Sample and Community Samples...... 54 Table 14: SAS-SR Scores for the Present Sample and Comparison Samples 56 Table 15: POMS Scores for the Allogeneic Group of the Present Sample and a Comparison Sample 58 Table 16: POMS Scores for the Allogeneic Group of the Present Sample and Two Comparison Samples... 59 Table 17: Comparison Between Groups Based on Time Since BMT: Demographic C h a r a c t e r i s t i c s 65 Table 18: Comparison Between Groups Based on Time Since BMT: Diagnosis 67 Table 19: Comparison Between Groups Based on Time Since BMT: I l l n e s s and Treatment History C h a r a c t e r i s t i c s 68 v i i Table 20: Comparison Between Groups Based on Time Since BMT: Current Age and Length of H o s p i t a l i z a t i o n 69 Table 21: S i m i l a r i t i e s Between the Autologous and Allogeneic Groups: Demographic Ch a r a c t e r i s t i c s 71 Table 22: S i m i l a r i t i e s Between the Autologous and Allogeneic Groups: Age and Length of H o s p i t a l i z a t i o n 72 Table 23: Differences Between the Autologous and Allogeneic Groups: I l l n e s s and Treatment History C h a r a c t e r i s t i c s 73 Table 24: Means and Standard Deviations f o r Scores on the POMS 75 v i i i L i s t of F i g u r e s F i g u r e 1: Conceptual Framework f o r D i s c u s s i n g Disease and I t s Impact 4 F i g u r e 2: Conceptual Framework i n R e l a t i o n t o Study of Bone Marrow T r a n s p l a n t a t i o n Symptoms and Impact 6 F i g u r e 3: Conceptual Framework i n R e l a t i o n t o Instruments U t i l i z e d f o r Study o f Bone Marrow T r a n s p l a n t a t i o n Symptoms and Impact 24 Acknowledgements I would l i k e to acknowledge the members of my the s i s committee, Carol J i l l i n g s and Judith Lynam. Both provided me with invaluable guidance, an atmosphere of encouragement, and the most e f f i c i e n t turn-around times I have ever known, thank-you! I am g r a t e f u l to Dr. Walter Boldt for h i s expertise and patience. He was t r u l y my mentor i n the f i e l d of s t a t i s t i c a l analysis. In the area of data management, I would l i k e to express my thanks to Dr. Chris Bradley and Dr. Calvin L e i for t h e i r assistance i n s e t t i n g up my data f i l e s . Without the time and e f f o r t of the former BMT patients who parti c i p a t e d , t h i s study would not have been possible. To them, I extend my sincerest appreciation. F i n a l l y , I would l i k e to thank my husband Randy, whose support of my work was always there and expressed i n many ways. 1 CHAPTER ONE Introduction Background to the Problem Although the complications of bone marrow transplantation (BMT) are p o t e n t i a l l y f a t a l , for those who face a l i f e -threatening disease BMT o f f e r s a chance for l i f e . BMT i s advocated as a therapeutic option that r e s u l t s i n more e f f e c t i v e disease treatment than conventional cytotoxic regimens for selected patients with leukemia (Appelbaum et a l . , 1985; Champlin et a l . , 1984; P h i l l i p s , 1985; S u l l i v a n et a l . , 1984). BMT i s also u t i l i z e d i n the treatment of other hematologic malignancies, a p l a s t i c anemia, and some s o l i d tumors (Champlin, et a l . , 1984). Advances i n the management of treatment-induced t o x i c i t i e s and complications have resulted i n an increase i n the number of BMTs performed. Consequently, more BMT r e c i p i e n t s are returning to t h e i r communities following treatment. Many of these i n d i v i d u a l s f i n d that, i n addition to the challenges associated with resuming t h e i r usual l i f e r oles a f t e r experiencing a serious i l l n e s s and treatment, they must learn to cope with a v a r i e t y of symptoms and emotions and with demanding health maintenance a c t i v i t i e s . Nurses play a c r i t i c a l r o l e i n the o v e r a l l care and support of the patient p r i o r to, during, and following BMT. Support includes preparing patients for discharge from h o s p i t a l and a s s i s t i n g them to f i n d e f f e c t i v e ways to cope with l i m i t a t i o n s imposed by i l l n e s s and treatment. A c l e a r understanding of the impact of BMT on the l i f e of the i n d i v i d u a l following discharge from the h o s p i t a l provides an ess e n t i a l basis upon which e f f e c t i v e nursing care may be planned i n both the in-patient and out-patient s e t t i n g . However, a cle a r understanding of t h i s experience cannot be gleaned from reports of research documented i n currently available l i t e r a t u r e reviewed. The t o p i c of marrow transplantation frequently appears i n the l i t e r a t u r e ; however, the emphasis i s pr i m a r i l y directed toward the medical management of the process. Much attention has been focused on the i n d i v i d u a l undergoing BMT during the i n -patient experience, p a r t i c u l a r l y the prevention and treatment of BMT-related complications. What has not received enough consideration i s the impact of i l l n e s s and treatment on the more global aspects of an ind i v i d u a l ' s l i f e i n terms of everyday functioning following discharge from the in-patient s e t t i n g . Statement of the Problem Although many BMT re c i p i e n t s experience a v a r i e t y of short and long term treatment-related symptoms, knowledge related to the type and frequency of symptoms, and the degree of related symptom d i s t r e s s i s not well documented i n the l i t e r a t u r e . Furthermore, no research was found that explores symptoms as well as the BMT r e c i p i e n t ' s a b i l i t y to perform a c t i v i t i e s of d a i l y l i v i n g and function i n usual roles, l e v e l of psychological distress/well-being, and general health perceptions. This study was designed to address the need f o r knowledge about BMT r e c i p i e n t s i n terms of symptoms, a b i l i t y to perform a c t i v i t i e s of d a i l y l i v i n g and function i n usual rol e s , l e v e l of psychological distress/well-being, and general perceptions of health. Purpose The purpose of t h i s study was to describe BMT r e c i p i e n t s i n terms of the type of symptoms experienced, the frequency of 3 symptoms experienced, and related symptom d i s t r e s s . Furthermore, the q u a l i t y of l i f e of BMT r e c i p i e n t s was described i n terms of the following indices: 1) a b i l i t y to perform a c t i v i t i e s of d a i l y l i v i n g and function i n usual roles, 2) psychological distress/well-being, and 3) general health perceptions. Conceptual Framework The trend toward broadening the scope of outcome evaluation in the f i e l d of health care research has created some d i f f i c u l t i e s pertaining to the i d e n t i f i c a t i o n , d e f i n i t i o n , and measurement of comprehensive health status concepts. Ware, who has published extensively i n the area of health status measurement (1976, 1984, 1987, 1988, 1989a, 1989b), has a r t i c u l a t e d the need to i d e n t i f y a set of core concepts that provide d i r e c t i o n for the study of disease impact and treatment outcomes. Ware (1984) states, "although there are many d i f f e r e n t diseases, the problem of conceptualizing and measuring the impact of disease on q u a l i t y of l i f e i s not completely overwhelming because there seems to be a manageable number of concepts that must be considered" (p. 2317). Consequently, Ware (1984) has directed e f f o r t s toward the development of a conceptual framework for the study of disease impact and treatment outcomes. Ware's (1984) conceptualization of disease impact i s the conceptual framework for t h i s study (see Figure 1). The framework consists of f i v e major concepts: 1) disease, 2) personal functioning, 3) psychological distress/well-being, 4) general health perceptions, and 5) s o c i a l / r o l e functioning. Disease, as depicted i n the framework, has the p o t e n t i a l to influence four major components: personal functioning, psychological distress/well-being, general health perceptions, 4 and s o c i a l / r o l e functioning. The framework suggests a re l a t i o n s h i p among the concepts by ordering them i n a s p e c i f i c fashion. Disease, a primary focus of health care, i s placed at the center of the framework because of the po t e n t i a l impact on a l l of the other areas. Personal functioning i s the performance or capacity to perform the d a i l y a c t i v i t i e s that i n d i v i d u a l s do to take care of themselves. S o c i a l / r o l e functioning i s regarded as a separate category of o v e r a l l functional status and placed further away from disease than personal functioning. Ware (1984) j u s t i f i e s the separate categorization and placement of s o c i a l / r o l e functioning by arguing that a greater number of factors l i k e l y a f f e c t the way disease influences s o c i a l / r o l e functioning than personal functioning. Disease Personal Functioning Psychological Distress/Well-Being General Health Perceptions Social/Role Functioning Figure 1. Conceptual Framework for Discussing Disease and Its Impact (Ware, 1984) The next component of the framework i s psychological distress/well-being. Directed toward an i n d i v i d u a l ' s f e e l i n g states, t h i s component i s often affected by disease and 5 t r e a t m e n t . G e n e r a l h e a l t h p e r c e p t i o n s , t h e n e x t c o m p o n e n t , i s a s e l f - r a t i n g o f h e a l t h t h a t i n c o r p o r a t e s s e l f - p e r c e p t i o n s i n r e l a t i o n t o d i s e a s e , p e r s o n a l f u n c t i o n i n g , a n d w e l l - b e i n g . T h e f i n a l c o m p o n e n t , s o c i a l / r o l e f u n c t i o n i n g , r e f e r s t o t h e p e r f o r m a n c e o r a b i l i t y t o p e r f o r m a c t i v i t i e s r e l a t e d t o o n e ' s u s u a l r o l e . W a r e ' s c o n c e p t u a l i z a t i o n o f d i s e a s e i m p a c t a r t i c u l a t e s w e l l w i t h t h e p r o b l e m s t a t e m e n t a n d t h e p u r p o s e o f t h i s s t u d y . T h e f r a m e w o r k p r o v i d e d d i r e c t i o n f o r t h e s t u d y o f a s i g n i f i c a n t o u t c o m e o f d i s e a s e a n d t r e a t m e n t ; s p e c i f i c a l l y , B M T - r e l a t e d symptoms e x p e r i e n c e d b y BMT r e c i p i e n t s . D i r e c t i o n was t a k e n f r o m t h e n o t i o n t h a t d i s e a s e a n d t r e a t m e n t may h a v e a n i m p a c t o n many a s p e c t s o f o n e ' s l i f e . T h i s n o t i o n s u g g e s t e d a u s e f u l a p p r o a c h t o a n e x a m i n a t i o n o f B M T - r e l a t e d s y m p t o m s , p e r s o n a l f u n c t i o n i n g , p s y c h o l o g i c a l d i s t r e s s / w e l l - b e i n g , h e a l t h p e r c e p t i o n s , a n d s o c i a l / r o l e f u n c t i o n i n g . F i g u r e 2 d e p i c t s t h e f r a m e w o r k i n r e l a t i o n t o t h i s s t u d y . R e s e a r c h Q u e s t i o n s 1. What a r e t h e s y m p t o m s , t h e i r f r e q u e n c y , a n d r e l a t e d symptom d i s t r e s s e x p e r i e n c e d b y BMT r e c i p i e n t s ? 2. What l e v e l o f p e r s o n a l a n d s o c i a l / r o l e f u n c t i o n i n g i s a t t a i n e d b y BMT r e c i p i e n t s ? 3 . What d e g r e e o f p s y c h o l o g i c a l d i s t r e s s / w e l l - b e i n g i s e x p e r i e n c e d b y BMT r e c i p i e n t s ? 4 . What a r e t h e g e n e r a l h e a l t h p e r c e p t i o n s o f BMT r e c i p i e n t s ? 5. What i s t h e r e l a t i o n s h i p b e t w e e n a s e t o f p o s t - B M T f u n c t i o n i n g v a r i a b l e s ( s y m p t o m s , p e r s o n a l a n d s o c i a l / r o l e f u n c t i o n i n g , p s y c h o l o g i c a l d i s t r e s s / w e l l - b e i n g , a n d g e n e r a l h e a l t h p e r c e p t i o n s ) a n d a s e t o f p o s t - B M T t i m e f r a m e 6 variables (3-12 months, 13-24 months, 25-48 months, over 48 months)? 6. What i s the difference i n symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions between autologous BMT re c i p i e n t s and allogeneic BMT recipients? BMT-Related Symptoms Experienced By BMT Recipients Personal Functioning Psychological Distress/Well-Being General Health Perceptions Social/Role Functioning Figure 2. Conceptual Framework i n Relation to Study of BMT Symptoms and Impact D e f i n i t i o n of Terms Bone marrow transplantation i s the intravenous infusion of bone marrow following marrow ablative chemotherapy and i n some cases t o t a l body i r r a d i a t i o n . Three d i f f e r e n t types of marrow transplantation are accomplished through the use of d i f f e r e n t sources of bone marrow: 1) human leukocyte antigen matched marrow from a related or unrelated donor; 2) the patient's own marrow; or 3) marrow from a g e n e t i c a l l y i d e n t i c a l twin (Champlin & Gale, 1984) . The three types of marrow transplantation are allogeneic, autologous, and syngeneicBMT, respectively. For 7 ease of reading, the term allogeneic BMT was u t i l i z e d i n t h i s study to describe p a r t i c i p a n t s who received a BMT using a related, unrelated, or i d e n t i c a l twin donor. Bone marrow transplantation r e c i p i e n t was u t i l i z e d i n t h i s study as a term to describe an adult who has been discharged from the h o s p i t a l and i s residing i n the community a f t e r receiving t o t a l body i r r a d i a t i o n and/or chemotherapy followed by an allogeneic or autologous bone marrow infusion. General health perceptions are a s e l f - r a t i n g of health that i s based upon an i n d i v i d u a l ' s evaluation of personal health (Ware, 1984). In t h i s study, general health perceptions were measured by K i l p a t r i c k and C a n t r i l ' s (1960) Self-Anchoring Scale (See Appendix C). Psychological distress/well-being refers to the i n d i v i d u a l ' s f e e l i n g states and mental health (Ware, 1984). In t h i s study, psychological distress/well-being was measured by the P r o f i l e of Mood States (McNair, 1981) i n terms of tension-anxiety, depression-dejection, a n g e r - h o s t i l i t y , v i g o r - a c t i v i t y , fatigue-i n e r t i a , and confusion-bewilderment (See Appendix B). Personal functioning i s the performance or capacity to perform the usual tasks that people do almost every day i n taking care of themselves (Ware, 1984). In t h i s study, personal functioning was measured by the following subscales of the Sickness Impact P r o f i l e (Bergner & Bobbitt, 1981): ambulation, alertness behavior, eating, mobility, recreation and pastimes, s o c i a l i n t e r a c t i o n , and sleep and rest (See Appendix D). S o c i a l / r o l e functioning i s the performance of or capacity to perform a c t i v i t i e s associated with an i n d i v i d u a l ' s usual role, including formal employment, school work, or homemaking (Ware, 8 1984). In t h i s study, s o c i a l / r o l e functioning was measured by the S o c i a l Adjustment Scale - Self Report (Weissman, 1987) (See Appendix E). Symptoms are a change i n the physical or mental state of a person that may be subjective or objective. Symptoms are subjective i f they are only perceptible to the patient, and objective i f they are also perceptible to others ( M i l l e r & Keane, 1972). In t h i s study, symptoms are those changes reported by BMT re c i p i e n t s as measured by the BMT Symptom Distress Inventory (See Appendix F). Assumptions For the purposes of t h i s study, the following assumptions were made: 1. Participants responded to the questionnaires and scales honestly and interpreted each item as intended. 2. Participants were able to i d e n t i f y symptoms, emotions, l e v e l of l i f e s a t i s f a c t i o n and health, and aspects of personal and s o c i a l r o l e functioning. Limitations Research findings may have been influenced by the following l i m i t a t i o n s : 1. The design of the study r e f l e c t s an emphasis on s e l f - r e p o r t data obtained from the pa r t i c i p a n t s . Due to the personal nature of the research topic, i t i s possible that p a r t i c i p a n t s may have been reluctant to share extensive personal data. Also, the nature and severity of i l l n e s s and treatment may have caused some ind i v i d u a l s to experience fatigue and reluctance to spend approximately one hour to complete the questionnaires. 9 2. D i f f i c u l t y i n o b t a i n i n g c u r r e n t a d d r e s s e s f o r a l l p o t e n t i a l p a r t i c i p a n t s c o u l d h a v e r e s u l t e d i n a s a m p l e t h a t may n o t b e r e p r e s e n t a t i v e . F u r t h e r m o r e , i t i s p o s s i b l e t h a t t h e d a t a may b e i n f l u e n c e d b y c h a r a c t e r i s t i c s o f t h e p a r t i c i p a n t s s u c h a s m a r i t a l s t a t u s , s o c i o e c o n o m i c s t a t u s , o r l e v e l o f e d u c a t i o n . F o r t h e s e r e a s o n s , t h e f i n d i n g s may n o t b e g e n e r a l i z a b l e b e y o n d t h e s a m p l e . 3 . Due t o t h e l a c k o f a v a l i d a n d r e l i a b l e BMT symptom i n s t r u m e n t , i t was n e c e s s a r y t o u t i l i z e a n e w l y c o n s t r u c t e d i n s t r u m e n t w i t h l i m i t e d v a l i d i t y a n d o n l y p r e l i m i n a r y r e l i a b i l i t y d a t a e s t a b l i s h e d p r i o r t o i m p l e m e n t a t i o n . S i g n i f i c a n c e o f t h e S t u d y T h i s s t u d y h a s b o t h s c i e n t i f i c a n d p r a c t i c a l s i g n i f i c a n c e . T h e r e i s a p a u c i t y o f l i t e r a t u r e r e l a t e d t o t h e b i o p s y c h o s o c i a l f u n c t i o n i n g o f BMT r e c i p i e n t o u t p a t i e n t s , p a r t i c u l a r l y d u r i n g t h e f i r s t o u t - p a t i e n t f o l l o w - u p y e a r . N u r s e s r e q u i r e a n i n d e p t h u n d e r s t a n d i n g o f t h e e x p e r i e n c e o f t h e BMT p a t i e n t f o l l o w i n g d i s c h a r g e f r o m t h e h o s p i t a l i n o r d e r t o p l a n a n d i m p l e m e n t e f f e c t i v e n u r s i n g c a r e p r i o r t o a n d d u r i n g t r e a t m e n t , a s w e l l a s t h r o u g h o u t t h e o u t - p a t i e n t f o l l o w - u p p e r i o d . A n i n v e s t i g a t i o n o f t h e p h y s i c a l , e m o t i o n a l , a n d s o c i a l i m p a c t o f BMT o n t h e BMT r e c i p i e n t w i l l r e s u l t i n a n i n c r e a s e d u n d e r s t a n d i n g o f t h i s e x p e r i e n c e b y n u r s e s a n d o t h e r h e a l t h c a r e p r o f e s s i o n a l s . K n o w l e d g e g a i n e d a s a r e s u l t o f t h i s s t u d y may b e u t i l i z e d b y n u r s e s a n d o t h e r h e a l t h c a r e p r o f e s s i o n a l s i n v o l v e d i n t h e c a r e a n d s u p p o r t o f t h e BMT r e c i p i e n t d u r i n g a l l p h a s e s o f t h e BMT p r o c e s s . S u p p o r t i v e p r o g r a m s g e a r e d t o w a r d t h e s p e c i f i c n e e d s o f t h i s c l i e n t g r o u p may b e p l a n n e d a n d i m p l e m e n t e d i n a c c o r d a n c e w i t h t h e f i n d i n g s o f t h i s s t u d y . Overview of the Thesis Content This t h e s i s consists of f i v e chapters. In Chapter One the background to the problem, conceptual framework, and research questions were presented. In Chapter Two, selected l i t e r a t u r e i s reviewed under f i v e headings: impact of i l l n e s s and treatment on q u a l i t y of l i f e , symptoms following BMT, personal and s o c i a l / r o l e functioning following BMT, psychological distress/well-being following BMT, and general health perceptions following BMT. In Chapter Three the research methodology i s addressed including a d e s c r i p t i o n of the research design, sampling procedure, data c o l l e c t i o n instruments, data c o l l e c t i o n procedure, data analysis, and e t h i c a l considerations. The sample i s described and the findings are presented and discussed i n Chapter Four. In Chapter Five, a summary i s provided, and conclusions and implications for nursing p r a c t i c e and research are presented. CHAPTER TWO Review of Selected L i t e r a t u r e Introduction The purpose of t h i s chapter i s to review selected l i t e r a t u r e . Throughout the l i t e r a t u r e review process, an emphasis was placed on research that i s pertinent to the BMT r e c i p i e n t population. However, due to the l i m i t e d number of studies that have been conducted i n t h i s f i e l d to date, sources pertaining to other populations treated for l i f e - t h r e a t e n i n g i l l n e s s were reviewed as well. The conceptual framework and purpose of the study directed the l i t e r a t u r e review toward the following t o p i c s : 1) impact of i l l n e s s and treatment on q u a l i t y of l i f e ; 2) symptoms following BMT; 3) personal and s o c i a l / r o l e function following BMT; 4) psychological d i s t r e s s / w e l l being following BMT; and 5) general health perceptions following BMT. Impact Of I l l n e s s And Treatment On Quality Of L i f e Quality of l i f e has been defined as "a person's sense of well-being that stems from s a t i s f a c t i o n or d i s s a t i s f a c t i o n with the areas of l i f e that are important to him/her" (Ferrans, 1985, p. 6). Ferrans (1990) u t i l i z e d t h i s d e f i n i t i o n to guide the development of an instrument to measure q u a l i t y of l i f e i n cancer patients because i t emphasizes the experience of l i f e rather than l i f e conditions, and i t i s subjective i n nature. Ferrans (1990) conceptualizes q u a l i t y of l i f e i n terms of four major domains; health and functioning, socioeconomic, p s y c h o l o g i c a l - s p i r i t u a l / and family. Within these domains, a t o t a l of 35 aspects of l i f e are presented. Quality of l i f e i s viewed as s a t i s f a c t i o n with each aspect of l i f e and the r e l a t i v e importance of each aspect according to the i n d i v i d u a l . Welch-McCaffrey (1985) i d e n t i f i e d several factors that a f f e c t the q u a l i t y of l i f e i n cancer patients and c l a s s i f i e d them into three major categories. Social factors include s o c i a l dependence, l i f e - s t y l e changes, time spent within the medical system, and a b i l i t y to return to work. Physiological factors include symptom d i s t r e s s , performance l e v e l , sexual a c t i v i t y , and freedom from pain. The t h i r d category, psychological factors, includes behavior and morale, freedom from stress, degree of happiness, degree of s a t i s f a c t i o n , purpose of l i f e , anxiety, and self-esteem. Welch-McCaffrey (1985) advocates a broad v i s i o n of q u a l i t y of l i f e that encompasses psychological as well as p h y s i o l o g i c a l dimensions and emphasizes subjective perceptions of the i n d i v i d u a l with cancer. I t i s widely acknowledged that a l l patients diagnosed with cancer face a s i g n i f i c a n t challenge i n learning to cope with the outcomes of i l l n e s s and treatment (Brown, & Kelly, 1984; Krouse, & Krouse, 1982; M i l l e r , Denner, & Richardson, 1976; Quint, 1963; Sanders, & Kardinal, 1977; Scott, Goode, & A r l i n , 1983; Tiedt, 1975). I t i s the outcomes of i l l n e s s and treatment, such as the impact on everyday functioning, that influence the q u a l i t y of the i n d i v i d u a l ' s l i f e . Physically, the patient must adjust to various symptoms and side e f f e c t s ; s o c i a l l y , the patient must adapt to a l t e r a t i o n s i n l i f e - s t y l e ; and psychologically, the patient must learn to cope with emotional responses and the ever-present knowledge that the disease may recur. Symptoms, a s p e c i f i c type of outcome of disease and treatment, have the p o t e n t i a l to act as forces that influence a number of aspects of an i n d i v i d u a l ' s l i f e . Symptoms Following BMT A symptom i s a change i n the physical or mental state of a person that may be subjective or objective. Symptoms are subjective i f they are only perceptible to the patient, and objective i f they are also perceptible to others ( M i l l e r & Keane, 1972). L i t e r a t u r e that pertains to the experience of symptoms i n the BMT r e c i p i e n t was reviewed i n two categories: 1) research papers that report symptom data; and 2) non-research reports that include c l i n i c a l impressions regarding symptoms. Wolcott, Wellisch, Fawzy & Landsverk (1986) conducted a study of 26 BMT r e c i p i e n t s who were an average of 42 months post-BMT (range 19-91 months). A major study finding was that 25% of the p a r t i c i p a n t s reported s i g n i f i c a n t physical symptoms. Selected symptoms included i n the study report were dry mouth, mouth soreness, trouble swallowing, nausea, vomiting, abdominal cramps/pain, diarrhea, skin rash, skin i t c h i n g . Data analysis revealed that 8-28% of the respondents indicated that they currently had each symptom frequently or always. Although i n t e r c o r r e l a t i o n of study variables revealed that health status, s o c i a l r o l e function, mood state, and self-esteem tended to improve or deteriorate together, the portion of the study that focused on symptoms related to symptom frequency only. Andrykowski, Henslee, & F a r r a l l (1989a) conducted a study of 23 in d i v i d u a l s who were an average of 26 months post-BMT (range 3-52 months) to document the physical and psychosocial functioning of BMT r e c i p i e n t s . The study did not attempt to examine a range of BMT-related symptoms; however the instruments u t i l i z e d did include a few items of t h i s nature. The Functional L i v i n g Index - Cancer (Schipper, Clinch, McMurray & L e v i t t , 1984), which includes items related to pain and nausea, was u t i l i z e d i n t h i s study. Results pertaining to symptoms included a r e l a t i o n s h i p between age and the following variables: 1) current physical functioning; 2) fatigue; 3) pain; and 4) nausea. S p e c i f i c a l l y , those who were under 30 years of age at the time of BMT reported better functioning, p a r t i c u l a r l y i n the physical domain. Furthermore, the investigators found that physical status does not necessarily show improvement with the passage of time. Hengeveld, Houtman, & Zwaan (1988) conducted a retrospective study of 17 BMT r e c i p i e n t s who were 12-60 months post-BMT. The p a r t i c i p a n t s were interviewed i n a semistructured manner to explore, "patients' opinions about the information given, the preparation, the support, t h e i r experiences, t h e i r coping behavior, and the reactions of t h e i r r e l a t i v e s " (p. 70). Participants completed the Beck Depression Inventory (1961), and the Symptom Checklist-90 (Derogatis & Lipman, 1973) to measure depression and psychoneurotic symptomatology. Participants were also rated on the Karnofsky Performance Scale (1949). Results pertaining to symptoms were as follows: 1) seven pa r t i c i p a n t s stated d a i l y l i f e was hampered by physical complications; 2) seven p a r t i c i p a n t s complained about sexual problems such as dyspareunia and low desire; and 3) most par t i c i p a n t s complained that t h e i r general condition had been severely affected by i l l n e s s and treatment. Nine of the 17 p a r t i c i p a n t s stated that they suffered from physical complications within 6-12 months post-BMT. A f e e l i n g of caution toward symptoms i n general was stated as an ongoing problem for these patients. An examination of sources that were not research reports, but included discussion of symptoms experienced by BMT r e c i p i e n t s , revealed a broad range of phy s i o l o g i c a l and psychologic changes that could occur. According to a c l a s s i f i c a t i o n of complications proposed by Nims & Strom (1988) , many of these symptoms appear to occur as a r e s u l t of chronic g r a f t versus host disease (GVHD). GVHD i s an immune-mediated condition where donor lymphocytes recognize host t i s s u e antigens as foreign and react against them (Nims, 1988). Another s i g n i f i c a n t category of symptoms occurs as a r e s u l t of chemotherapy, t o t a l body i r r a d i a t i o n , and immunosuppressive therapy (Corcoran-Buchsell, 1986; Nims, et a l . , 1988). I t would appear from the l i t e r a t u r e reviewed that i t i s not always possible to c l e a r l y d i s t i n g u i s h symptoms i n terms of the categories presented above; however, i t i s possible to categorize post-BMT symptoms i n terms of the p a r t i c u l a r body system affected. For t h i s reason, symptoms w i l l be categorized as follows: 1) o r a l changes, 2) ocular changes, 3) skin changes, 4) g a s t r o i n t e s t i n a l changes, 5) musculoskeletal changes, 6) changes i n sexuality and f e r t i l i t y , 7) in f e c t i o n s , 8) neurological and psychological changes, and 9) energy l e v e l s . A summary of symptoms that BMT re c i p i e n t s may experience as reported i n the l i t e r a t u r e reviewed (Deeg, et a l . , 1988; Corcoran-Buchsell, 1986; and Nims, et a l . , 1988) may be found i n Appendix A. In summary, i t i s apparent that a broad range of symptoms, both subjective and objective, may be experienced by BMT r e c i p i e n t s . Although some notion of symptom incidence i s a v a i l a b l e , what i s not apparent from the l i t e r a t u r e reviewed i s the associated experience of symptom d i s t r e s s i n t h i s population. Personal And Social/Role Functioning Following BMT Personal functioning i s described by Ware (1984) as the performance or capacity to perform the d a i l y a c t i v i t i e s that i n d i v i d u a l s do to take care of themselves. S o c i a l r o l e functioning r e f e r s to the performance or a b i l i t y to perform a c t i v i t i e s r elated to one's usual r o l e including schoolwork, home making, or formal employment (Ware, 1984). Although Ware (1984) makes a d i s t i n c t i o n between these two types of functioning, reference to general functioning of BMT r e c i p i e n t s i n the research papers reviewed was primarily i n r e l a t i o n to s o c i a l role functioning. Of the 17 BMT r e c i p i e n t s studied by Hengeveld and colleagues (1988), 10 had resumed work or school. Wolcott and colleagues (1986) found that a s i g n i f i c a n t portion (84%) of the 26 BMT r e c i p i e n t p a r t i c i p a n t s i n t h e i r study were a c t i v e l y engaged i n work, household a c t i v i t i e s , or school at the time of data c o l l e c t i o n . In a longitudinal study of 16 BMT r e c i p i e n t s conducted by Andrykowski, Henslee & Barnett (1989b), 50% of a l l p a r t i c i p a n t s were unemployed for health-related reasons. The combined p a r t i c i p a n t s from these studies represented a sample of BMT r e c i p i e n t s who were between 8 and 91 months post-BMT. Hengeveld and colleagues (1988) reported that 13 of the 17 p a r t i c i p a n t s were within a range of 80 - 100% performance status as rated by the Karnofsky Performance Status Scale. Wolcott and colleagues (1986) obtained s o c i a l adjustment scores as measured by Weissman's (1987) scale that indicated p a r t i c i p a n t s had a current l e v e l of s o c i a l r ole functioning that was very s i m i l a r to a healthy community sample. Although the scores suggested s l i g h t l y poorer functioning i n BMT rec i p i e n t s i n the Wolcott study (1986), t h i s r e s u l t did not reach s t a t i s t i c a l s i g n i f i c a n c e . Andrykowski and colleagues (1989b) reported i l l n e s s - r e l a t e d dysfunction i n BMT rec i p i e n t s as measured by Bergner & Bobbitt's (1981) Sickness Impact P r o f i l e (SIP) as greater than that among renal transplant patients, and comparable to that of chronic peritoneal d i a l y s i s patients. At the time of the t h i r d data c o l l e c t i o n with t h i s sample, Andrykowski and colleagues (1989b) found that greater than 50% of the par t i c i p a n t s reported an increase i n i l l n e s s - r e l a t e d dysfunction according to the Alertness Behavior subscale of the SIP i n areas such as concentration, thinking, forgetfulness, slowed reaction time, and clumsiness. F i n a l l y , i n terms of personal functioning of BMT re c i p i e n t s , Wolcott and colleagues (1986) reported that 80% of par t i c i p a n t s were at lea s t moderately well rested upon awakening, and 88% of pa r t i c i p a n t s had an appetite that was at lea s t as s a t i s f a c t o r y as normal. Psychological Distress/Well-Being Following BMT An i n d i v i d u a l ' s f e e l i n g states are often affected by disease and treatment (Ware, 1984). This notion i s supported by the studies of BMT re c i p i e n t s reported i n the l i t e r a t u r e . Wolcott and colleagues (1986) found that male and female BMT rec i p i e n t s reported higher l e v e l s of anxiety, depression, anger, and t o t a l mood disturbance than did sex-matched marrow donors as measured by the P r o f i l e of Mood States (POMS) (McNair, et a l . , 1971). Furthermore, female BMT rec i p i e n t s reported higher confusion l e v e l s than d i d female marrow donors. Male and female BMT re c i p i e n t group mean scores did not d i f f e r s i g n i f i c a n t l y on the subscale scores or the t o t a l mood disturbance score (Wolcott, et a l . , 1986). Andrykowski and colleagues (1989a) reported POMS scores that are s i m i l a r to those reported by Wolcott and colleagues (1986). When the investigators compared the scores of recently diagnosed lung cancer patients and survivors of t e s t i c u l a r cancer to those of BMT r e c i p i e n t s , the re s u l t s suggested that the l a t t e r had greater mood disturbance than eit h e r of the other two groups. Andrykowski and colleagues (1989a) suggested that emotional readjustment for BMT rec i p i e n t s may pose a greater challenge than i s currently recognized. Hengeveld and colleagues (1988) u t i l i z e d instruments to measure depression and psychoneurotic complaints i n 17 BMT re c i p i e n t s . Two of these p a r t i c i p a n t s were found to have moderate to severe depression and many psychoneurotic complaints as measured by the Beck Depression Inventory (1961) and the Symptom Checklist-90 (Derogatis & Lipman, 1973), respectively. Thirteen of the 17 par t i c i p a n t s reported that t h e i r p e r s o n a l i t i e s had changed i n a p o s i t i v e manner since undergoing BMT; s p e c i f i c a l l y they f e l t stronger and more self-assured (Hengeveld, et a l . , 1988). Wolcott and colleagues (1986) reported BMT r e c i p i e n t s ' group mean self-esteem score as measured by the Simmons Self-Esteem scale was moderately lower than group mean scores of 117 kidney transplant r e c i p i e n t s . In summary, there appears to be a va r i e t y of emotional responses documented i n r e l a t i o n to BMT r e c i p i e n t s . The research studies reported i n the l i t e r a t u r e present more information i n r e l a t i o n to mood states; however, a much les s complete picture i s reported i n r e l a t i o n to a va r i e t y of psychological aspects such as depression, psychoneurotic symptoms, self-esteem, and perceptions of personality changes following BMT. General Health Perceptions Following BMT General health perception i s a s e l f - r a t i n g of health that incorporates self-perceptions i n r e l a t i o n to disease, personal functioning, and well-being (Ware, 1984). Only one study that pertained to BMT r e c i p i e n t s ' perceptions of health following BMT could be found i n the l i t e r a t u r e reviewed. Wolcott and colleagues (1986) reported that the 26 par t i c i p a n t s rated t h e i r current health as follows: 4 (16%) excellent, 13 (52%) good, 7 (28%) f a i r , and 1 (4%) poor. An investigator-constructed instrument was also u t i l i z e d i n the Wolcott (1986) study to measure l i f e s a t i s f a c t i o n i n r e l a t i o n to f i v e l i f e areas; work/school, l e i s u r e , family l i f e , friendships, and health/physical condition. The BMT re c i p i e n t group reported a lower percentage of highly s a t i s f i e d ratings than did the marrow donor group i n a l l areas except the friendship category which was s i m i l a r for both groups. Seventy-f i v e percent of the BMT rec i p i e n t s reported a high l e v e l of s a t i s f a c t i o n with re l a t i o n s h i p s and a c t i v i t i e s (Wolcott, et a l . , 1986). Some i n t e r r e l a t i o n s h i p s between physical status, emotional state, and functional status are suggested by the investigators i n the BMT r e c i p i e n t studies reviewed. Wolcott and colleagues (1986) reported that self-esteem, health status, s o c i a l r o l e function, and mood state tend to improve or deteriorate together. Hengeveld and colleagues (1988) stated that the psychological state of BMT r e c i p i e n t s was found to be c l o s e l y linked to physical condition. 20 Summary The l i t e r a t u r e reviewed s u b s t a n t i a t e s t h a t f a c t t h a t i l l n e s s and treatment may have a broad impact on the i n d i v i d u a l ' s l i f e from p h y s i o l o g i c a l , p s y c h o l o g i c a l , and s o c i o l o g i c a l p e r s p e c t i v e s . Based upon t h i s g e n e r a l premise and the nature o f the l i t e r a t u r e reviewed, i t would appear t h a t the BMT r e c i p i e n t p o p u l a t i o n r e q u i r e s f u r t h e r study. Although t h e r e i s a broad range of p o s s i b l e post-BMT symptoms, v e r y l i t t l e i s known about the o v e r a l l i n c i d e n c e of t h e s e symptoms, and no l i t e r a t u r e was found t h a t e x p l o r e s the degree of a s s o c i a t e d symptom d i s t r e s s i n the BMT r e c i p i e n t p o p u l a t i o n . L i t e r a t u r e p e r t a i n i n g t o p e r s o n a l and s o c i a l / r o l e f u n c t i o n of i n d i v i d u a l s f o l l o w i n g BMT seems t o focus on r e t u r n i n g t o work w i t h l i m i t e d e x p l o r a t i o n of a c t i v i t i e s of d a i l y l i v i n g and o t h e r l i f e r o l e s such as parent and p a r t n e r . Mood s t a t e s f o l l o w i n g BMT were e x p l o r e d i n most of the s t u d i e s reviewed. F i n d i n g s suggest an o v e r a l l t r e n d toward poorer f u n c t i o n i n g i n the BMT r e c i p i e n t group w i t h r e g a r d t o mood s t a t e s when compared t o o t h e r groups i n c l u d i n g marrow donors, lung cancer p a t i e n t s or t e s t i c u l a r cancer s u r v i v o r s . Only one study addressed the t o p i c o f g e n e r a l h e a l t h p e r c e p t i o n s , s p e c i f i c a l l y s e l f r a t i n g s of h e a l t h and l i f e s a t i s f a c t i o n f o l l o w i n g BMT. Although the l i t e r a t u r e reviewed p r o v i d e s some understanding of post-BMT f u n c t i o n i n g , t h e r e remains a need t o e x p l o r e the t o p i c i n g r e a t e r depth. The p r e s e n t study was designed t o address the need f o r knowledge about BMT r e c i p i e n t s i n terms of symptoms, p e r s o n a l and s o c i a l / r o l e f u n c t i o n i n g , p s y c h o l o g i c a l d i s t r e s s / w e l l - b e i n g , and g e n e r a l h e a l t h p e r c e p t i o n s . 21 CHAPTER THREE Methodology Introduction This chapter describes the research design, sampling procedure, data c o l l e c t i o n instruments, data c o l l e c t i o n procedure, e t h i c a l considerations, and the s t a t i s t i c a l procedures used i n data analysis. Research Design A d e s c r i p t i v e comparative and c o r r e l a t i o n a l design was u t i l i z e d i n t h i s study. The c o r r e l a t i o n a l portion allowed the researcher to describe relationships between a set of post-BMT functioning variables and a set of post-BMT time frame variables. The post-BMT functioning set of variables included symptoms, personal and s o c i a l / r o l e function, psychological d i s t r e s s / w e l l -being, and general health perceptions. The time set of variables consisted of four post-BMT time frames: 3-12 months, 13-24 months, 25-48 months, and more than 48 months post-BMT. The comparative design allowed the researcher to examine and describe differences between two groups: those who received donor bone marrow (allogeneic BMT), and those who had t h e i r own bone marrow reinfused (autologous BMT) i n terms of symptoms, personal and s o c i a l / r o l e function, psychological distress/well-being, and general health perceptions. Sampling Procedure The accessible population for t h i s study consisted of a l l i n d i v i d u a l s who received a BMT i n B r i t i s h Columbia. S p e c i f i c c r i t e r i a established to se l e c t the pa r t i c i p a n t s for in c l u s i o n i n the sample were as follows: 1. The subjects were over 18 years of age. 2. The subjects had undergone allogeneic or autologous marrow transplantation. 3. The subjects were presumed to be disease free or i n remission. 4. The subjects had been discharged from the hospital following BMT for at l e a s t one month. 5. The subjects were not h o s p i t a l i z e d at the time of the study. 6. The subjects were able to read, write and speak English. The c r i t e r i o n of disease free status or remission status was established because the researcher wished to focus on those i n d i v i d u a l s for whom marrow transplantation, at the time of the study, had been successful i n eliminating t h e i r disease. The c r i t e r i o n of at l e a s t one month following discharge from the h o s p i t a l was established to avoid further burdening individuals who were i n the early discharge phase. During the i n i t i a l discharge period following BMT, i n d i v i d u a l s are required to manage self-administration of several medications, s e l f - c a r e of a central venous catheter, attend several c l i n i c appointments per week, and deal with the o v e r a l l challenge of leaving the hospital following a l i f e - t h r e a t e n i n g treatment experience. Study materials were mailed to 216 BMT r e c i p i e n t s who were thought to meet the c r i t e r i a for i n c l u s i o n . Of t h i s number, 136 (62.96%) returned the questionnaires. Of the 80 who d i d not return completed questionnaires, 3 patients had died, 1 was h o s p i t a l i z e d , 16 had moved and current addresses were not a v a i l a b l e , and 60 did not respond for unknown reasons. At least 16 of the p o t e n t i a l p a r t i c i p a n t s did not have the opportunity to p a r t i c i p a t e because they did not receive the study materials due to non-current addresses. Therefore, the response rate from those who t h e o r e t i c a l l y received the study materials was at least 66.67%. Data C o l l e c t i o n Instruments The instruments that were used for data c o l l e c t i o n i n t h i s study are as follows: 1. Investigator-constructed BMT Symptom Distress Inventory (See Appendix F). 2. Bergner and Bobbitt's (1981) Sickness Impact P r o f i l e (See Appendix D). 3. McNair, Lorr, & Droppleman's (1981) P r o f i l e of Mood States (See Appendix B). 4. K i l p a t r i c k and C a n t r i l ' s (1960) Self-Anchoring Scale (See Appendix C). 5. Weissman's (1987) Social Adjustment Scale - S e l f Report (See Appendix E). 6. Investigator-constructed Demographic Information, I l l n e s s And Treatment History Data C o l l e c t i o n Guide (See Appendix G). The r e l a t i o n s h i p between the conceptual framework and the instruments that were u t i l i z e d for data c o l l e c t i o n i s depicted i n Figure 3. BMT Symptom Distress Inventory The investigator was not aware of any instruments that were designed to study the wide range of symptoms that may be experienced by BMT r e c i p i e n t s . For t h i s reason, an instrument was developed to study the type of symptoms, frequency, and associated symptom d i s t r e s s experienced by BMT r e c i p i e n t s . The BMT Symptom Distress Inventory consists of 45 subjective and objective symptoms that have been reported i n the l i t e r a t u r e as o c c u r r i n g i n BMT r e c i p i e n t s . B e c a u s e t h e i n v e n t o r y c o n t a i n s one i t e m t h a t p e r t a i n s s p e c i f i c a l l y t o men a n d one t h a t p e r t a i n s t o women, t h e a c t u a l t o t a l o f symptoms t h a t c o u l d p e r t a i n t o a n i n d i v i d u a l r e s p o n d e n t i s 4 4 . S c o r e s may b e c a l c u l a t e d t o r e f l e c t t h e f r e q u e n c y o f symptoms e x p e r i e n c e d . A d d i t i o n a l l y , a t o t a l symptom d i s t r e s s s c o r e may b e c a l c u l a t e d b y summing t h e p r o d u c t o f e a c h symptom f r e q u e n c y s c o r e m u l t i p l i e d b y t h e d e g r e e o f a s s o c i a t e d d i s t r e s s . B M T - R e l a t e d Symptoms E x p e r i e n c e d By BMT R e c i p i e n t s BMT Symptom D i s t r e s s Inventory P e r s o n a l F u n c t i o n i n g S i c k n e s s Impact P r o f i l e S u b s c a l e s : A,AB,E,M,RP,SI,SR P s y c h o l o g i c a l D i s t r e s s / W e l l - B e i n g P r o f i l e Of Mood S t a t e s G e n e r a l H e a l t h P e r c e p t i o n s C a n t r i l S e l f Anchoring S c a l e S o c i a l / R o l e F u n c t i o n i n g S o c i a l Adjustment S c a l e - S e l f Report F i g u r e 3 . C o n c e p t u a l F r a m e w o r k i n R e l a t i o n t o I n s t r u m e n t s U t i l i z e d f o r S t u d y o f BMT Symptoms a n d I m p a c t C o n t e n t v a l i d i t y was e s t a b l i s h e d t h r o u g h r e v i e w a n d r e v i s i o n o f t h e i n s t r u m e n t i n a c c o r d a n c e w i t h f e e d b a c k r e c e i v e d f r o m two c o n t e n t e x p e r t s : a r e g i s t e r e d n u r s e e x p e r i e n c e d i n t h e c a r e o f 25 BMT r e c i p i e n t s i n the ambulatory care setting, and a physician who s p e c i a l i z e s i n the care of individ u a l s through a l l phases of the BMT process. Ad d i t i o n a l l y , two former BMT patients who did not meet the c r i t e r i a for inc l u s i o n i n the study completed the inventory and provided feedback. Through the use of the data c o l l e c t e d as a r e s u l t of t h i s study, Hoyt's estimate of r e l i a b i l i t y ( G h i s e l l i , Campbell & Zedeck, 1981) was u t i l i z e d to examine the in t e r n a l consistency r e l i a b i l i t y of the symptom frequency scale of the BMT Symptom Distress Inventory. Preliminary analysis of the r e l i a b i l i t y of the instrument resulted i n alpha c o e f f i c i e n t s ranging from 0.52 for the mouth symptoms subscale to 0.80 for the skin symptoms subscale and an o v e r a l l r e l i a b i l i t y c o e f f i c i e n t of 0.92 for the en t i r e symptom frequency scale (see Table 1). Table 1 R e l i a b i l i t y C o e f f i c i e n t s for Symptom Frequency Scale of the BMT  Symptom Distress Inventory Hoyt Estimate of R e l i a b i l i t y Skin Symptoms 0.80 Jo i n t Symptoms 0.76 Eye Symptoms 0.74 Mouth Symptoms 0.52 Gas t r o i n t e s t i n a l Symptoms 0.77 Sexuality Symptoms 0.56 Other Problems 0.77 Total Symptom Frequency Scale 0.92 This i n i t i a l examination of i n t e r n a l consistency r e l i a b i l i t y suggests that, although the instrument requires further r e v i s i o n and refinement, the majority of the alpha c o e f f i c i e n t s for the subscales and the t o t a l symptom frequency scale f a l l within acceptable ranges of r e l i a b i l i t y . Sickness Impact P r o f i l e (SIP) The SIP (Bergner, 1981) i s an inventory c h e c k l i s t comprised of 13 6 items categorized into 12 sub-categories. The instrument y i e l d s a t o t a l SIP percent score as well as percent scores for each of the following categories: 1) sleep and rest; 2) eating; 3) work; 4) home management; 5) recreation and pastimes; 6) ambulation; 7) mobility; 8) body care and movement; 9) s o c i a l i n t e r a c t i o n ; 10) alertness behavior; 11) emotional behavior; and 12) communication. Poorer functioning i s indicated by higher subscale scores. The SIP was developed to provide a measure of e f f e c t s or outcomes of health care for i n d i v i d u a l s or groups i n terms of perceived health status. I t was designed to measure, "the behavioral impacts of sickness i n terms of dysfunction...[it] does not assess l e v e l s of p o s i t i v e functioning" (Bergner, 1981, p. 788). The SIP was i n i t i a l l y developed i n 1972. Patients, health care professionals, caregivers, and healthy i n d i v i d u a l s were asked to provide statements that described sickness-related changes i n behavior. Following standard grouping and sorting procedures, three f i e l d t r i a l s were conducted to provide data on f e a s i b i l i t y , r e l i a b i l i t y , and v a l i d i t y . The f i n a l version was tested with s p e c i f i c samples who represented a wide range of type and severity of condition. Bergner and colleagues (1981) report i n t e r n a l consistency r e l i a b i l i t y as high with alpha c o e f f i c i e n t s of 0.94. Test-retest r e l i a b i l i t y i s also reported as high over three f i e l d t r i a l s ranging from 0.88 to 0.92. Testing of three administration approaches revealed that mail-delivered SIPs may not provide data comparable to that obtained from interviewer administered or interviewer-delivered self-administered SIPs. However, both types of self-administered SIPs (mailed or interviewer-delivered) provided higher mean scores suggesting that these methods may be more v a l i d than interviewer-administered approaches. A ser i e s of f i e l d t r i a l s and v a l i d a t i o n studies i n s p e c i f i c disease e n t i t i e s have supported the appropriateness of the SIP as an outcome measure for the evaluation of treatment regimens and r e s u l t i n g d i s a b i l i t i e s (Bergner, 1978). The SIP has been u t i l i z e d i n one previous study of BMT re c i p i e n t s (Andrykowski, et a l . , 1989b). For the purpose of t h i s study, the following selected subscales of the SIP were u t i l i z e d : Ambulation, Alertness Behavior, Eating, Mobility, Recreation and Pastimes, S o c i a l Interaction, and Sleep and Rest (see Appendix D). I t i s acceptable to use selected categories of the SIP without a f f e c t i n g r e l i a b i l i t y or basic construct v a l i d i t y f o r each category (Bergner, 1978). However, Bergner (1978) advises investigators who wish to use selected categories that the discr i m i n a t i v e capacity of the SIP as an o v e r a l l measure of health status w i l l be decreased. P r o f i l e Of Mood States (POMS) The POMS (McNair, 1981) i s comprised of 65 items rated on a 5 point L i k e r t scale. The instrument y i e l d s a t o t a l mood state score as well as subscale scores for the following emotional states: 1) tension-anxiety; 2) depression-dejection; 3) anger-h o s t i l i t y ; 4) v i g o r - a c t i v i t y ; 5) f a t i g u e - i n e r t i a ; and 6) confusion-bewilderment. The POMS was designed to measure perception of a f f e c t with t o t a l scores ranging from -32, suggesting low emotional disturbance, to +204, suggesting high emotional disturbance (McNair, 1981). Internal consistency r e l i a b i l i t y of the POMS i s reported as high with alpha c o e f f i c i e n t s of 0.90 or higher (McNair, Lorr, & Droppleman, 1981). Test-retest r e l i a b i l i t y has been established with p s y c h i a t r i c patients and ranged from 0.65 to 0.74 for the si x factors. P redictive and concurrent v a l i d i t y have also been examined for t h i s instrument. Haskell, Pugatch & McNair (1969) found the factor scores s e n s i t i v e to change that was associated with psychotherapy. Furthermore, Lorr, McNair & Weinstein (1964) noted s e n s i t i v i t y to changes associated with mild t r a n q u i l i z e r s . The Taylor Manifest Anxiety Scale was u t i l i z e d by the l a t t e r researchers to examine concurrent v a l i d i t y , and the POMS was found to corr e l a t e with the tension-anxiety factor at a reported l e v e l of 0.80 (McNair et a l . , 1981). For the purpose of t h i s study, the POMS was u t i l i z e d to measure psychological distress/well-being. The POMS has also been u t i l i z e d i n three previous studies of BMT re c i p i e n t s (Wolcott, et a l . , 1986; Andrykowski, et a l . , 1989a; Andrykowski, et a l . , 1989b). C a n t r i l Self-Anchoring Scale The C a n t r i l Self-Anchoring Scale ( C a n t r i l , 1965) was designed to measure an indiv i d u a l ' s general sense of well-being. The s c a l e i s comprised of a v e r t i c a l l a d d e r w i t h t e n s t e p s and a s e r i e s of q u e s t i o n s . K i l p a t r i c k and C a n t r i l (1960) d e s c r i b e the s c a l e as s e l f - a n c h o r i n g because the i n d i v i d u a l i s asked t o d e s c r i b e the b e s t and worst p o s s i b l e l i f e . Responses t o t h i s item form the top and bottom st e p s of the l a d d e r , r e s p e c t i v e l y . U s i n g these s e l f - d e f i n e d anchoring p o i n t s , i n d i v i d u a l s are asked t o i n d i c a t e where they would p l a c e themselves on the l a d d e r c u r r e n t l y , two years p r e v i o u s , and two years from now. C a n t r i l (1965) and K i l p a t r i c k & C a n t r i l (1960) i n t e r v i e w e d a wide v a r i e t y of s u b j e c t s t o c o l l e c t data on how i n d i v i d u a l s d e f i n e d t h e i r a n c h o r i n g p o i n t s . A c c o r d i n g t o K i l p a t r i c k and C a n t r i l (1960), people w i t h d i f f e r e n t backgrounds were d i f f e r e n t i a t e d by the s c a l e i n terms of a s p i r a t i o n s . Although these r e s u l t s suggest evidence of content v a l i d i t y , c o n c u r r e n t v a l i d i t y cannot be s u b s t a n t i a t e d because no i n f o r m a t i o n c o u l d be found t h a t r e l a t e s the C a n t r i l s c a l e t o o t h e r instruments t h a t measure l i f e s a t i s f a c t i o n . In terms of r e l i a b i l i t y , C a n t r i l (1965) s t a t e s t h a t the s u b j e c t i v e nature of the r a t i n g s a b s o l v e the s c a l e from t r a d i t i o n a l r e l i a b i l i t y concerns. C a n t r i l (1965) s t a t e s t h a t the a n c h o r i n g p o i n t s o f the s c a l e are p e r s o n a l l y d e f i n e d , and should remain r e l a t i v e l y c o n s t a n t f o r an i n d i v i d u a l over s h o r t p e r i o d s o f time, t h e r e f o r e m i n i m i z i n g the e r r o r v a r i a n c e . The C a n t r i l S e l f - A n c h o r i n g S c a l e has been used t o measure p e r c e p t i o n s of i n d i v i d u a l s p r i m a r i l y i n the area o f l i f e s a t i s f a c t i o n (McKeehan, Cowling, & Wykle, 1986). A c c o r d i n g t o McKeehan, Cowling, & Wykle (1986), when u t i l i z e d i n n u r s i n g r e s e a r c h the s c a l e i s most f r e q u e n t l y used t o measure p e r c e p t i o n s o f h e a l t h . For the purpose of t h i s study, the C a n t r i l Self-Anchoring Scale was u t i l i z e d to measure general health perceptions; s p e c i f i c a l l y , perceptions of health and l i f e s a t i s f a c t i o n . The scale was adapted for use i n two ways. F i r s t , the steps of the ladder were numbered from one to ten instead of the o r i g i n a l zero to nine scale suggested by C a n t r i l (1965). This modification was based upon the experience of other researchers who found that the o r i g i n a l zero point could be considered as equivalent to death by some in d i v i d u a l s (Laborde & Powers, 1980). The second modification was made to the instructions for the instrument to f a c i l i t a t e the mode of data c o l l e c t i o n for t h i s study. Because p a r t i c i p a n t s were asked to reply by mail rather than by interview, i n d i v i d u a l s were instructed to think about rather than describe to the researcher t h e i r past, present, and future health and l i f e s a t i s f a c t i o n (see Appendix C). S o c i a l Adjustment Scale - Self Report (SAS-SR) The SAS-SR (Weissman, 1987) i s a 54 item questionnaire designed to measure adjustment i n various areas of s o c i a l and r o l e function. The instrument y i e l d s an o v e r a l l adjustment score as well as subscale adjustment scores for the following areas: 1) work outside the home; 2) work at home; 3) work as a student; 4) s o c i a l and l e i s u r e ; 5) extended family; 6) marital; 7) parental; 8) family un i t ; and 9) economic (Weissman, 1976). Higher scores indicate poorer s o c i a l adjustment. The SAS-SR i s an appropriate instrument to measure s o c i a l and r o l e function adjustment of p a r t i c i p a n t s i n t h i s study. The SAS-SR has been u t i l i z e d with p s y c h i a t r i c patient groups and community samples and r e l i a b i l i t y and v a l i d i t y data has been reported (Weissman, & Bothwell, 1976; Weissman, Prussoff, Thompson, Harding, & Myers, 1978; Weissman, Sholomskas, & John, 1981). The instrument has also been u t i l i z e d i n one previous study of BMT re c i p i e n t s (Wolcott, et a l . , 1986). Demographic Information, I l l n e s s And Treatment History Data  C o l l e c t i o n Guide The researcher designed a data c o l l e c t i o n guide to acquire demographic and i l l n e s s and treatment hi s t o r y information (see Appendix G). The data c o l l e c t e d through t h i s instrument were used to describe the sample, to enable comparison to previous research, and to f a c i l i t a t e comprehension of the findings i n terms of the po t e n t i a l influence of demographic, i l l n e s s , and treatment c h a r a c t e r i s t i c s . Data C o l l e c t i o n Procedure The Medical Director of the BMT program at both Vancouver General Hospital and B r i t i s h Columbia's Cancer Agency provided a l i s t of in d i v i d u a l s who met the c r i t e r i a f or i n c l u s i o n i n the study. A l l ind i v i d u a l s on the l i s t were assigned a code number and t h i s information was kept i n a sealed envelope and locked i n an area separate from any data received. An envelope containing study materials was mailed to each of the i n d i v i d u a l s on the l i s t . Each envelope contained an information l e t t e r , the data c o l l e c t i o n instruments, and a stamped return envelope that was pre-addressed to the researcher. A l l study materials were coded with a c o n f i d e n t i a l i d e n t i f i c a t i o n number. A reminder l e t t e r was mailed to a l l p o t e n t i a l p a r t i c i p a n t s three weeks a f t e r the study materials were mailed. This l e t t e r was to serve as a reminder to those i n d i v i d u a l s who had not returned the study materials and to thank those who had already p a r t i c i p a t e d . 32 Data A n a l y s i s Data from the q u e s t i o n n a i r e s were coded and e n t e r e d i n t o a computer f i l e . A l l key-punching was v e r i f i e d by the r e s e a r c h e r . For the purposes of t h i s study, t h r e e phases o f data a n a l y s i s were undertaken. The f i r s t phase employed d e s c r i p t i v e t e c h n i q u e s , whereas the second and t h i r d phases were accomplished by u s i n g c o r r e l a t i o n a l t e c h n i q u e s . A d e s c r i p t i o n of each of these phases f o l l o w s . In the f i r s t phase, d e s c r i p t i v e techniques were u t i l i z e d t o d e s c r i b e the sample and d i f f e r e n c e s between groups i n terms of demographic c h a r a c t e r i s t i c s and i l l n e s s and treatment h i s t o r y c h a r a c t e r i s t i c s . D e s c r i p t i v e techniques were a l s o used t o address r e s e a r c h q u e s t i o n s 1 t o 4 through the c a l c u l a t i o n of means, st a n d a r d d e v i a t i o n s , and s c o r e ranges f o r each of the instruments employed. The S t a t i s t i c a l Package f o r the S o c i a l S c i e n c e s (SPSS) was used f o r t h i s phase o f the data a n a l y s i s . In the second and t h i r d phase of the a n a l y s i s , r e s e a r c h q u e s t i o n s 5 and 6 were addressed. To address r e s e a r c h q u e s t i o n number 5, c a n o n i c a l c o r r e l a t i o n was performed t o determine the s t r e n g t h and n ature of the r e l a t i o n s h i p between a s e t of post-BMT f u n c t i o n i n g v a r i a b l e s and a s e t of post-BMT time frame v a r i a b l e s . The post-BMT f u n c t i o n i n g s e t of v a r i a b l e s i n c l u d e d symptoms, p e r s o n a l and s o c i a l / r o l e f u n c t i o n i n g , p s y c h o l o g i c a l d i s t r e s s / w e l l - b e i n g , and g e n e r a l h e a l t h p e r c e p t i o n s . The p o s t -BMT time frame s e t of v a r i a b l e s i n c l u d e d f o u r time frames: 3-12 months, 13-24 months, 25-48 months, and over 48 months post-BMT. The B i o m e d i c a l Computer Programs P - S e r i e s (BMDP:6M) was u t i l i z e d f o r t h i s p o r t i o n of the a n a l y s i s . F i n a l l y , research question 6 was addressed through p r o f i l e analysis, an a p p l i c a t i o n of multivariate analysis of variance. P r o f i l e analysis was u t i l i z e d to t e s t the difference between the autologous BMT r e c i p i e n t group and the allogeneic BMT r e c i p i e n t group i n r e l a t i o n to the post-BMT functioning variables of symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions. SPSS was u t i l i z e d f o r t h i s portion of the data analysis. The l e v e l of s i g n i f i c a n c e for t h i s study was set at 0.10 on the basis of the consequences of making a Type I or a Type II error. A Type II error was considered somewhat more serious than a Type I error. In the event of a Type II error, one would indicate that there was no difference between groups when there may have a c t u a l l y been a difference (Howell, 1987). Protection of Human Rights P r i o r to conducting t h i s study, review and approval of the proposal was obtained from the University of B r i t i s h Columbia Behavioral Sciences Screening Committee for Research and other Studies Involving Human Subjects and the Vancouver General Hospital Research Committee. Each p o t e n t i a l p a r t i c i p a n t received an introductory information l e t t e r that described the purpose of the study and a d e s c r i p t i o n of the involvement requested (see Appendix H). The l e t t e r emphasized the voluntary nature of p a r t i c i p a t i o n i n the study and freedom to withdraw from the study at any time without jeopardizing health care or the relationships developed with health care providers. The l e t t e r also informed p a r t i c i p a n t s that no d i r e c t benefit to them was anticipated as a r e s u l t of p a r t i c i p a t i o n i n the study. The l e t t e r stated that respondents who returned the study materials had implied t h e i r consent to p a r t i c i p a t e i n the study. C o n f i d e n t i a l i t y i n r e l a t i o n to a l l sources of data col l e c t e d was assured and respected at a l l times. No names appeared on any of the data c o l l e c t i o n instruments. Each p a r t i c i p a n t was assigned a code number. A l i s t of the p a r t i c i p a n t s ' names and code numbers were kept separate from the data and were accessible only to the researcher. Information that could i d e n t i f y the par t i c i p a n t s was not used or revealed anywhere. Summary In t h i s chapter, the research methodology was presented including a description of the research design, the sampling procedure, the data c o l l e c t i o n instruments, the data c o l l e c t i o n procedure, data analysis procedures, and measures for the protection of human r i g h t s . In Chapter Four, the findings are presented and discussed. CHAPTER FOUR Presentation and Discussion of the Findings Introduction This chapter i s organized under three headings: c h a r a c t e r i s t i c s of the sample; findings; and discussion of the findings. Following a presentation of the c h a r a c t e r i s t i c s of the sample, the findings are presented primarily i n tabular form. Discussion of the findings i s presented i n the t h i r d section. C h a r a c t e r i s t i c s of the Sample One hundred and t h i r t y - s i x BMT r e c i p i e n t s from the accessible population p a r t i c i p a t e d i n the study. What follows i s a presentation of the demographic c h a r a c t e r i s t i c s and i l l n e s s and treatment h i s t o r y c h a r a c t e r i s t i c s of the sample. Demographic C h a r a c t e r i s t i c s of the Sample Demographic data c o l l e c t e d from the p a r t i c i p a n t s included age, gender, marital status, number of children, and educational l e v e l . Most of the p a r t i c i p a n t s were married with college or u n i v e r s i t y l e v e l education and ranged i n age from 19 to 58 years (see Table 2). I l l n e s s and Treatment History C h a r a c t e r i s t i c s of the Sample I l l n e s s and treatment his t o r y data c o l l e c t e d from the p a r t i c i p a n t s included o r i g i n a l diagnosis, BMT type, whether the p a r t i c i p a n t had t o t a l body i r r a d i a t i o n (TBI), length of stay i n h o s p i t a l for BMT, whether the p a r t i c i p a n t had been re-admitted since the BMT, whether the p a r t i c i p a n t was presently taking any medications, and time since BMT. The respondents ranged between 3 and 113 months post-BMT (M = 27.8, SD = 22.8). F i f t y - f o u r of the respondents (39.7%) indicated that t h e i r o r i g i n a l diagnosis f i t into the other category and s p e c i f i e d the diagnosis. Examination of responses to t h i s category revealed that Hodgkin's disease and lymphoma were the most common responses followed by t e s t i c u l a r cancer. One respondent stated ovarian cancer as the o r i g i n a l diagnosis (see Table 3). Table 2 Demographic C h a r a c t e r i s t i c s of BMT Recipients C h a r a c t e r i s t i c n(136) % Sex Female 61 44.9 Male 75 55.1 Ma r i t a l Status Married/Cohabiting 94 69.1 Single 30 22.1 Divorced 5 3.7 Separated 5 3.7 Widowed 1 .7 Data Missing 1 .7 Children Yes 81 59.6 No 51 37.5 Data Missing 4 2.9 Educational Level Grade 7-9 5 3.7 Grade 10-12 55 40.4 Community College 35 25.7 University 39 28.7 Data Missing 2 1.5 Age i n Years Mean =35.9 SD = 9.1 Range = 19-58 Table 3 I l l n e s s and Treatment Cha r a c t e r i s t i c s of BMT Recipients C h a r a c t e r i s t i c n(136) % Diagnosis Leukemia 72 53.0 Ap l a s t i c Anemia 3 2.2 Multiple Myeloma 4 2.9 Other 54 39.7 Data Missing 3 2.2 Type of BMT Autologous 71 52.2 Related Donor a 58 42.6 Unrelated Donor 7 5.1 Total Body Yes 46 33.8 I r r a d i a t i o n No 87 64.0 Re-Admitted Yes 60 44.1 Since BMT No 73 53.7 Data Missing 3 2.2 Taking BMT-Related Yes 72 52.9 Medications No 54 39.7 Data Missing 10 7.4 Time Since BMT 1-12 Months 40 29.4 13-24 Months 40 29.4 25-48 Months 27 19.9 Over 48 Months 29 21.3 Note. a Two of the respondents had an i d e n t i c a l twin donor. The reader i s reminded that the non-autologous BMT r e c i p i e n t s who p a r t i c i p a t e d i n t h i s study consisted of i n d i v i d u a l s who received donor marrow from a r e l a t i v e , an i d e n t i c a l twin, or a matched unrelated donor. Different terminology i s sometimes u t i l i z e d to describe these types of transplants. For example, syngeneic BMT i s used when the donor i s an i d e n t i c a l twin, and unrelated BMT may be used when the transplanted bone marrow i s obtained from a matched unrelated donor. For ease of reading, the term allogeneic BMT w i l l be u t i l i z e d to describe part i c i p a n t s who received a BMT using any of these three sources of donor bone marrow. Findings The findings of the study are organized i n accordance with each phase of the data analysis. In the f i r s t section, the r e s u l t s of the descriptive analyses are presented. These techniques were employed to address research questions 1 to 4. Responses to each of the instruments are presented i n terms of means, standard deviations, and ranges and i n tabular form. Then, the r e s u l t s of the c o r r e l a t i o n a l analyses are presented. In t h i s section, findings from the canonical c o r r e l a t i o n and p r o f i l e analysis are presented i n r e l a t i o n to research questions 5 and 6, respectively. The findings i n r e l a t i o n to each research question are discussed i n the f i n a l section of the chapter. Descriptive Analyses Research question 1: What are the symptoms, t h e i r  frequency, and related symptom d i s t r e s s experienced by BMT  recipients? The t o t a l scores on the symptom frequency component of the BMT Symptom Distress Inventory ranged from 43.0 to 150.0 (M = 79.47, SD = 22.18). Subscale scores related to symptom frequency are presented i n Table 4. Table 4 Symptom Frequency Subscale Scores Subscale Mean S.D. Minimum Maximum Skin Symptoms 1. 60 .598 1.00 3.73 Jo i n t Symptoms 2.11 .849 1.00 4.60 Eye Symptoms 1.78 .861 1. 00 5.00 Mouth Symptoms 1.59 .634 1.00 4.50 Ga s t r o i n t e s t i n a l and Eating Symptoms 1.60 .580 1.00 4.00 Sexuality Symptoms 2.34 1.274 1.00 5.00 Miscellaneous Problems 2.14 .704 1.00 3.86 Those who reported having a symptom rated i t according to how upsetting they found that p a r t i c u l a r symptom. Table 5 presents symptoms with the highest mean scores i n descending order from most upsetting to lea s t upsetting. Research question 2: What l e v e l of personal and s o c i a l / r o l e  functioning i s attained by BMT recipients? A summary of p a r t i c i p a n t s ' responses to the SIP i s presented i n Table 6. The t o t a l adjustment scores on the SAS-SR ranged from 1.11 to 2.68 (M = 1.72, SD = 0.35). Subscale scores are presented i n Table 7. Table 5 Symptoms: Most to Least Upsetting According to Mean Score a 40 Symptom (Mean Score) D i f f i c u l t y with intercourse (women) (2.79) Fatigue (2.66) Mood swings (2.56) Weakness/loss of strength (2.44) Decreased concentration (2.40) Decreased sexual desire (men and women) (2.39) Decreased memory (2.38) Not sleeping well (2.20) Coughing (2.00) Weight gain and j o i n t pain (1.98) Muscle pain and s t i f f j o i n t s (1.92) Impotence (men) (1.88) Dry/rough skin (1.81) Burning p a i n f u l eyes and mental confusion (1.73) Itchy skin and dry eyes (1.72) Diarrhea and l i g h t s e n s i t i v e eyes (1.71) Note. a High mean scores indicate most upsetting symptoms. Table 6 Personal Functioning as Measured by the SIP Subscale Mean S.D. Minimum Maximum Sleep and Rest 12.86 14.75 0.0 79.16 Mob i l i t y 4.60 10.41 0.0 59.81 So c i a l Interaction 9.87 11.65 0.0 65.10 Ambulation 6.15 8.95 0.0 37.41 Alertness Behavior 11.48 18.92 0.0 83 .78 Recreation/Pastimes 15.62 17.13 0.0 66.11 Eating 1.69 3.65 0.0 19.72 Research question 3: What degree of psychological  distress/well-being i s experienced by BMT recipients? The subscale scores for the POMS are presented i n Table 8. Research Question 4; What are the general health  perceptions of BMT recipients? P a r t i c i p a n t s ' responses to the C a n t r i l Self-Anchoring Scale for Level of Health are presented i n Table 9. Pa r t i c i p a n t s ' responses to the C a n t r i l Self-Anchoring Scale fo r Level of L i f e S a t i s f a c t i o n are presented i n Table 10. Cor r e l a t i o n a l Analyses Research Question 5: What i s the re l a t i o n s h i p between a set of post-BMT functioning variables (symptoms, personal and  s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions) and a set of post-BMT time frame  vari a b l e s (3-12 months. 13-24 months. 25-48 months, and over 48  months post-BMT)? The r e s u l t s of the canonical analysis did not substantiate a s i g n i f i c a n t s t a t i s t i c a l r e l a t i o n s h i p between the set of post-BMT functioning variables and the set of post-BMT time frame va r i a b l e s . The implications of t h i s finding w i l l be pursued further i n the discussion of the findings. Table 7 Social/Role Functioning as Measured by the SAS-SR Subscale a Mean S.D. Minimum Maximum n Work Outside 1.65 1.14 1.00 5.00 65 Work Inside Home 1.76 0.65 1.00 3.40 26 Work at School 1.23 0.25 1.00 1. 67 10 Social/Leisure 1.80 0.48 1.00 3.33 135 Extended Family 1.53 0.44 1.00 3.50 135 M a r i t a l 1.84 0.44 1.00 2.88 98 Parenting 1.48 0.47 1.00 4.00 59 Family Unit 1.69 0.53 1.00 3.33 110 Economics 1.58 1.09 1.00 5.00 132 Total Adjustment Score 1.72 0.35 1.11 2.68 136 Note. a Economics refe r s to one item pertaining to f i n a n c i a l status and not an e n t i r e subscale. Research question 6: What i s the difference i n symptoms,  personal and s o c i a l / r o l e functioning, psychological  distress/well-being, and general health perceptions between  autologous BMT r e c i p i e n t s and allogeneic BMT recipients? Using p r o f i l e analysis, there was a s i g n i f i c a n t group difference i n psychological distress/well-being between the autologous BMT re c i p i e n t group and the allogeneic BMT re c i p i e n t group as measured by the POMS (F = 3.00, p = .086). No other s i g n i f i c a n t group differences were found between the autologous BMT r e c i p i e n t group arid the allogeneic BMT r e c i p i e n t group i n r e l a t i o n to the other measures used. The implications of these findings w i l l be explored further i n the discussion of the findings. Table 8 Psychological Distress/Well-Being as Measured by the POMS Subscale Mean S.D. Minimum Maximum Tension/Anxiety 8.52 Depression/Dejection 8.29 Anger/Hostility 7.65 Vi g o r / A c t i v i t y 17.20 Fatigue/Inertia 8.74 Confusion/ 5.71 Bew i1derment 5.94 0.00 34.00 8.05 0.00 38.00 7.19 0.00 40.00 6.32 2.00 32.00 6.39 0.00 26.00 4.30 0.00 22.00 Note. The V i g o r / A c t i v i t y subscale i s negatively related to the other subscales; therefore higher Vigor scores indicate better functioning. Table 9 Perceived Level of Health as Measured bv the C a n t r i l S e l f -Anchoring Scale Subscale Mean S.D. Minimum Maximum Present Health 6.75 1.80 1.0 10.00 Health Before I l l n e s s 8.49 1.87 1.0 10.00 Health Expected i n Six Months 8.07 1. 63 1.0 10.00 Health of Average Person 8.23 1.25 3.0 10.00 Table 10 Perceived L i f e S a t i s f a c t i o n as Measured bv the C a n t r i l S e l f -Anchoring Scale Subscale Mean S.D. Minimum Maximum Present L i f e S a t i s f a c t i o n 6.74 1.79 2.0 10.00 L i f e S a t i s f a c t i o n Before I l l n e s s 7.46 1.85 2.0 10.00 L i f e S a t i s f a c t i o n Expected i n Six Months 8.05 1.56 2.0 10.00 L i f e S a t i s f a c t i o n of Average Person 7.56 1.13 5.0 10.00 Discussion of the Findings The findings w i l l be discussed i n terms of the following: 1) c h a r a c t e r i s t i c s of the data; 2) c h a r a c t e r i s t i c s of the sample; 3) symptoms; 4) personal and s o c i a l / r o l e functioning; 5) psychological distress/well-being; 6) general health perceptions 7) the re l a t i o n s h i p between post-BMT functioning and time since BMT; and 8) the difference i n post-BMT functioning based on type of BMT. The discussion w i l l be approached i n r e l a t i o n to the conceptual framework for the study, other research findings, and methodological issues. C h a r a c t e r i s t i c s of the Data In order to assess the degree to which the data complied with the assumption of normality, s t a t i s t i c a l techniques were employed to examine kurtosis, skewness, and o u t l i e r s . Kurtosis scores of greater than 2.0 were found on f i v e of the BMT Symptom Distress Inventory subscales, two of the SIP subscales, three of the SAS subscales, two of the POMS subscales, two of the C a n t r i l Health items, and a l l of the C a n t r i l L i f e S a t i s f a c t i o n items. With regard to skewness, scores that did not f a l l within a range of plus or minus 3.0 were found on two of the SAS subscales, one of the C a n t r i l Level Health items, and a l l of the C a n t r i l L i f e S a t i s f a c t i o n items. F i n a l l y , an assessment of o u t l i e r s revealed scores that were not within a range of plus or minus 3.0 on s i x subscales of the BMT Symptom Distress Inventory, three subscales of the SIP, three subscales of the SAS, four subscales of the POMS, and a l l of the C a n t r i l Health and L i f e S a t i s f a c t i o n items. Based upon t h i s assessment, i t would appear that the data v i o l a t e d the assumption of normality i n the case of several v a r i a b l e s . Although the option of data transformation was ava i l a b l e to the researcher, and could have co n t r o l l e d for the e f f e c t of kurtosis, skewness, and o u t l i e r s to some degree, the researcher decided against t h i s approach due to the d i f f i c u l t i e s associated with i n t e r p r e t a t i o n of the transformed scores. One pla u s i b l e explanation for the v i o l a t i o n of the assumption of normality i s the performance of the instruments chosen for t h i s study with regard to r e l i a b i l i t y . For t h i s reason, through the use of the data c o l l e c t e d as a r e s u l t of t h i s study, Hoyt's estimate of r e l i a b i l i t y was u t i l i z e d to examine the in t e r n a l consistency r e l i a b i l i t y of the SIP, SAS-SR, C a n t r i l S e l f -Anchoring Scales for Level of Health and L i f e S a t i s f a c t i o n , and the POMS. This approach was also u t i l i z e d to examine the int e r n a l consistency r e l i a b i l i t y of the BMT Symptom Distress Inventory as reported previously i n Chapter Three. On i n i t i a l examination, the alpha c o e f f i c i e n t s for the subscales of the SAS-SR and the POMS were quite acceptable ranging from 0.72 to 0.99. Analysis of the subscales of the SIP would suggest less favorable r e s u l t s with alpha c o e f f i c i e n t s of 0.35 to 0.77. The C a n t r i l Self-Anchoring Scales for Level of Health and L i f e S a t i s f a c t i o n also performed less favorably than anticipated with regard to int e r n a l consistency r e l i a b i l i t y , with Hoyt estimates of r e l i a b i l i t y of 0.49 and 0.53, respectively. Further analysis provided more information about the source of variance i n the case of each subscale of the instruments u t i l i z e d . Internal consistency r e l i a b i l i t y must be considered i n r e l a t i o n to three possible sources of variance: i n d i v i d u a l variance, variance due to the instrument items, and residual variance. In a l l cases, one hopes that residual variance i s minimal. With the exception of the s o c i a l and l e i s u r e , extended family, parental, and marital subscales of the SAS-SR, and the two C a n t r i l Self-Anchoring Scales, residual variance was minimal for the remaining subscales with c o e f f i c i e n t s ranging from 0.04 to 0.95. For the purposes of t h i s study, the researcher would have preferred that variance was due to the e f f e c t of individuals rather than due to the e f f e c t of the instrument items. I t would appear that the items contributed to the variance i n the majority of the subscales with the exception of the work, work at home, and work at school subscales of the SAS-SR. In l i g h t of the preceding discussion, the researcher wishes to suggest that the findings of t h i s study be viewed i n accordance with the degree to which the data accommodated the s t a t i s t i c a l assumptions of normality, and the sources of variance. Both of these areas c l e a r l y point to methodological challenges f o r future studies of t h i s nature. C h a r a c t e r i s t i c s of the Sample At the time of writing, the researcher was aware of four studies concerned with the general area of biopsychosocial functioning following BMT. These studies were conducted with sample sizes ranging from 17 to 26 (Wolcott, et a l . , 1986; Hengeveld, et a l . , 1988; Andrykowski et a l . , 1989a & 1989b). As a r e s u l t of t h i s study, the researcher was able to c o l l e c t data concerning post-BMT functioning from 136 BMT r e c i p i e n t s . Despite the large number of pa r t i c i p a n t s i n t h i s study, there were several factors that may have influenced the representativeness of the sample. I t should be noted that 66.67% of those who were i d e n t i f i e d as e l i g i b l e to p a r t i c i p a t e i n the study, and f o r whom a current address was avai l a b l e , responded by returning completed questionnaires. Although t h i s was a s i g n i f i c a n t response rate for mailed questionnaires, a higher rate of return would c l e a r l y have been more desirable. Sixteen packages of study materials were returned to the researcher due to incorrect addresses. I t i s possible that the problem of incorrect addresses also applied to some degree to those 60 indiv i d u a l s who did not p a r t i c i p a t e for unknown reasons. Wolcott and colleagues (1986) reported that 84% of those e l i g i b l e to p a r t i c i p a t e i n t h e i r study were actually contacted and 72% of t h i s group par t i c i p a t e d . Andrykowski and colleagues (1989a) reported that 96% of the 24 e l i g i b l e patients p a r t i c i p a t e d i n t h e i r study. Among those who did p a r t i c i p a t e , several factors impacted favorably on the representativeness of the sample. The sample was r e l a t i v e l y equitable with regard to gender, and type of transplant, and each of the four post-BMT time frame groups. Although the i n c l u s i o n c r i t e r i a required that p a r t i c i p a n t s were able to read, write and speak English, the researcher was not aware that anyone was excluded from the study on the basis of t h i s c r i t e r i o n . No s t a t i s t i c s were found with which to determine the representativeness of the sample i n r e l a t i o n to the other demographic, or i l l n e s s and treatment hi s t o r y c h a r a c t e r i s t i c s . Based upon the large number of p a r t i c i p a n t s , the response rate, and other c h a r a c t e r i s t i c s of the sample that have been discussed, i t would appear that the sample for t h i s study was reasonably representative of adults who received t h e i r BMT i n Vancouver. Symptoms The respondents were asked to indicate t h e i r experience with symptoms over the past month with regard to type, frequency, and how upsetting they found a p a r t i c u l a r symptom. Frequency scores ranged from 43.0 to 150.00 (M = 79.47, SD = 22.18) . Group mean scores on the d i s t r e s s scale made i t possible to rank the symptoms from most to le a s t upsetting (see Table 5). Based upon the r e s u l t s of Wolcott and colleagues (1986), i t was anticipated that p a r t i c i p a n t s i n t h i s study would also i d e n t i f y BMT-related symptoms as a feature of t h e i r post-BMT experience. Table 11 shows very s i m i l a r r e s u l t s for the sample i n t h i s study and Wolcott's sample (1986) with regard to symptoms experienced "never/rarely." I f the categories of "sometimes" and "often/always" were combined for the present sample, with the exception of mouth soreness, very s i m i l a r symptom frequency r e s u l t s for the two samples would be observed. I t i s not possible to determine the reason for the difference i n the frequency of mouth soreness between the two samples. However, i t i s possible to suggest that the groups may have d i f f e r e d i n r e l a t i o n to the occurrence of complications that may cause mouth soreness, such as g r a f t versus host disease. Mean scores for the BMT Symptom Distress Inventory suggest that sexuality symptoms, miscellaneous problems, and j o i n t symptoms occurred most frequently i n p a r t i c i p a n t s i n t h i s study with group mean scores of 2.34, 2.14, and 2.11, respectively (see Table 4). Due to the high group mean score for frequency, i t i s c l e a r that re-categorization of the varied symptoms represented i n the miscellaneous problems category would provide more useful information. Table 11 Symptom Frequency Means of the Present Sample and a Comparison  Sample a Never/Rarely Sometimes Often/Always Present Sample (Wolcott, et a l . , 1986) n % n % n % Dry Mouth 92 68.1 26 19.3 17 12.6 (18) (72.0) (7) (28.0) Mouth Soreness ^ 123 91.1 8 5.9 4 2.9 (19) (73.1) (7) (26.9) Trouble Swallowing c 125 92.6 7 5.2 3 2.2 (24) (92.3) (2) (7.7) Nausea 109 80.7 17 12.6 9 6.7 (24) (92.3) (2) (7.7) Vomiting 128 94.8 6 4.4 1 0.7 (24) (92.3) (2) (7.7) Diarrhea 101 74.8 25 18.5 9 6.7 (19) (73.1) (7) (26.9) Skin Rash 113 83.7 11 8.1 11 8.8 (23) (88.5) (3) (11.5) Skin Itching 87 64.4 31 23.0 17 12.6 (19) (73.1) (7) (26.9) Note. a BMT r e c i p i e n t s (n=26) (Wolcott, et a l . , 1986). D Mouth pain or burning i n present study. c Pain or burning when swallowing i n present study. The ranking of symptoms from most to l e a s t upsetting revealed a hierarchy of symptom concern from the perspective of the BMT r e c i p i e n t . A l l but one of the ten most upsetting symptoms f e l l into the three most frequent categories of j o i n t symptoms, sexuality symptoms, and miscellaneous problems (see Table 5). Hengeveld and colleagues (1988) also reported frequent complaints of sexual problems such as decreased desire and dyspareunia. The reasons for frequent occurrence and d i s t r e s s i n r e l a t i o n to j o i n t symptoms, sexuality symptoms, and those categorized as miscellaneous problems require further exploration. The range of possible related factors i s broad and would include medications, complications such as gr a f t versus host disease, in f e c t i o n s , and blood c e l l counts, to name a few. Although i t i s not possible to explore t h i s area further within the scope of t h i s study, i t i s reasonable to suggest that assessment for symptoms i n each of these categories should be emphasized by those involved i n the health care of BMT re c i p i e n t s . The conceptual framework for t h i s study suggests that symptoms, an outcome of disease, may have an impact on many le v e l s of functioning. Due to the large number of possible post-BMT symptoms (see Appendix A), and the po t e n t i a l impact that these symptoms may have on post-BMT functioning, the researcher anticipated that an examination of post-BMT symptom frequency and d i s t r e s s would y i e l d useful information. Although the re s u l t s must be viewed i n l i g h t of the previous comments on r e l i a b i l i t y of the symptom instrument and c h a r a c t e r i s t i c s of the data, the knowledge about symptom frequency and d i s t r e s s gained as a resu l t of t h i s study provides d i r e c t i o n for assessment i n t h i s patient group. The rela t i o n s h i p s depicted i n the conceptual framework for t h i s study would support future research on the relat i o n s h i p between symptoms and other aspects of post-BMT functioning. Furthermore, i t would be useful to explore relationships between symptom frequency and d i s t r e s s and demographic and treatment c h a r a c t e r i s t i c s . Personal and Social/Role Functioning The conceptual framework for t h i s study defines personal functioning and s o c i a l / r o l e functioning as d i s c r e t e aspects of functional status, both of which require consideration when the impact of i l l n e s s and treatment i s studied. The r e s u l t s of t h i s study provide more des c r i p t i v e information about personal and s o c i a l / r o l e functioning of BMT r e c i p i e n t s . These r e s u l t s w i l l be discussed i n r e l a t i o n to other relevant studies and comparison samples i n the sections that follow. Both personal and s o c i a l / r o l e functioning may be influenced s i g n i f i c a n t l y by disease outcomes such as symptoms; however, Ware (1984) cautions against any assumptions i n t h i s regard. Ware (1984) states that considerable discrepancy between disease status, personal function and r o l e function i s to be expected. For example, one might observe l i t t l e change i n r o l e performance i n the face of physical l i m i t a t i o n s . Furthermore, s i g n i f i c a n t personal and r o l e dysfunction may occur when no physical l i m i t a t i o n s e x i s t . Although the r e l a t i o n s h i p between symptoms and personal and s o c i a l / r o l e functioning was not explored i n t h i s study, the researcher f e e l s that t h i s would be an important area fo r future study. Personal Functioning The present sample appears to have scored considerably lower on three of the SIP subscales than the sample reported by Andrykowski and colleagues (1989b) (see Table 12). This suggests better functioning by the present sample i n r e l a t i o n to alertness behavior, recreation and pastimes, and s o c i a l i n t e r a c t i o n . This apparent difference between the two BMT sample groups cannot be explained; however, possible factors to consider would be the difference i n sample s i z e and mean time since BMT. Table 12 SIP Scores for the Present Sample and a Comparison Sample a Present Sample Comparison Data Andrykowski, et a l . , 1989b n = 136 n = 16 Variable Mean S.D. Mean S.D. Alertness Behaviour 11.48 18.92 31.9 29.4 Recreation and Pastimes 15.62 17.13 24.1 23.8 Soc i a l Interaction 9.87 11.65 28.5 26.4 Note. , a Allogeneic BMT rec i p i e n t s assessed at a mean of 37 months post-BMT (Andrykowski, et a l . , 1989b)* Andrykowski and colleagues (1989b) also reported comparisons between SIP subscale scores for the BMT sample for t h e i r study and renal transplant and chronic peritoneal d i a l y s i s patients. Consistent with the findings of Andrykowski and colleagues (1989b), the present sample also scored higher on the three SIP subscales than the renal transplant sample, suggesting poorer functioning by the BMT sample. 54 Social/Role Functioning Both s i m i l a r i t i e s and differences i n s o c i a l / r o l e functioning are suggested by the SAS scores for the sample for t h i s study and two community sample groups. The scores for the sample f o r t h i s study tended to be higher than those of community sample groups, suggesting poorer o v e r a l l s o c i a l / r o l e functioning i n the BMT r e c i p i e n t sample (see Table 13). This finding i s consistent with the r e s u l t s of the study conducted by Wolcott and colleagues (1986). Table 13 SAS Scores for the Present Sample and Community Samples a Present Sample Community Data Weissman, et a l . , 1990 Variable Males Females n Mean S.D. n Mean S.D. n Mean S.D. Work 101 1. 64 0. 56 127 1. 26 0. 31 272 1. 46 0. 50 S o c i a l / Leisure 135 1. 80 0. 48 205 1. 83 0. 51 277 1. 83 0. 53 Extended Family 135 1. 53 0. 42 201 1. 33 0. 31 274 1. 34 0. 35 Ma r i t a l 98 1. 84 0. 44 170 1. 72 0. 46 191 1. 77 0. 49 Parenting 59 1. 48 0. 47 101 1. 35 0. 41 175 1. 43 0. 43 Family Unit 110 1. 69 0. 53 194 1. 35 0. 51 270 1. 54 0. 62 Note. a Community Sample (Weissman, et a l . , 1990). Although the present sample appears to be functioning at a lower l e v e l than the community sample i n the work domain, o v e r a l l , a large percentage of the BMT r e c i p i e n t group reported a favorable l e v e l of functioning i n t h e i r usual work ro l e s . For example, 89.2% of those who described t h e i r usual roles as workers for pay (n=65) reported that they had worked i n the previous two weeks, and 75.0% reported that they had not missed any work days i n the same time period. In the same group, 89.8% reported that they were able to do t h e i r work very well. When compared to the SAS scores reported by Wolcott and colleagues (1986), the present sample tended to score lower i n the s o c i a l / l e i s u r e , extended family, and family unit domains, suggesting better functioning i n these areas (see Table 14). The reason f o r t h i s apparent difference i s d i f f i c u l t to determine. I t i s reasonable to consider the difference i n sample s i z e and the fact that the present sample was an average of 27.8 months post-BMT while the comparison sample was an average of 42 months following BMT. Scores for the present sample were not categorized by gender. The SAS scores for the present sample tended to f a l l somewhere between those of the male and female comparison groups for the work, marital, and parenting domains, with the female comparison group scoring higher than the present sample i n the work and marital domains (see Table 14). I t i s d i f f i c u l t to comment further on the reason for t h i s f i n d i n g ; however, the apparent differences support the notion that i t would be hel p f u l to s t r a t i f y samples by gender i n future studies. Table 14 SAS Scores for the Present Sample and Comparison Samples a Present Sample Comparison Data Wolcott, et a l . , 1986 Variable Males Females n Mean S.D. n Mean S.D. n Mean S.D. Work 101 1.64 0.66 8 1.48 0.42 11 1.76 0.75 S o c i a l / Leisure 135 1.80 0.48 10 2.24 0.57 16 1.95 0. 64 Extended Family 135 1.53 0.42 10 1.65 0.52 16 1.71 0.75 Ma r i t a l 98 1.84 0.44 8 1.63 0.33 9 1.91 0.61 Parenting 59 1.48 0.47 5 1.60 0.29 8 1.47 0.36 Family Unit 110 1.69 0.53 7 1.86 0.26 9 1.78 0.82 Note. a Allogeneic BMT rec i p i e n t s (Wolcott, et a l . , 1986). Psychological Distress/Well-Beinq Psychological distress/well-being, as depicted i n the conceptual framework for t h i s study, i s often a l t e r e d by disease and treatment (Ware, 1984). The researcher anticipated that BMT rec i p i e n t s would show scores on the POMS that suggested an impact on t h e i r psychological distress/well-being. To substantiate t h i s presumption, the BMT r e c i p i e n t s ' POMS scores were compared to a normative sample. In comparison to a normative sample of college student males, BMT rec i p i e n t s scored less favorably on a l l subscales with the exception of vigor, where the BMT recipien t s showed better functioning (McNair, et a l . , 1981). This finding i s consistent with the re s u l t s reported by Andrykowski and colleagues (1989a & 1989b). Wolcott and colleagues (1986) also reported poorer functioning by BMT reci p i e n t s based upon comparison of POMS scores to those of a healthy sample. They reported s i g n i f i c a n t l y higher POMS group mean scores for female BMT re c i p i e n t s for t o t a l mood disturbance, as well as the tension, depression, anger, and confusion subscales when compared with group mean scores of female BMT donors. Nonsignificantly higher group mean scores were found for the male BMT rec i p i e n t s for t o t a l mood disturbance, and the depression, anger, and fatigue subscales when compared to male BMT donors (Wolcott, et a l . , 1986). In the present sample, 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 d ifference i n psychological distress/well-being as measured by the POMS was found between the autologous BMT and the allogeneic BMT groups, with the autologous BMT group scoring more favorably. For t h i s reason, comparison to the findings reported by Andrykowski and colleagues (1989a) w i l l be li m i t e d to the allogeneic group of the present sample (see Table 15). In ac t u a l i t y , because the autologous BMT group scored more favorably than the allogeneic BMT group of the present sample, the comparison sample data from the work of Andrykowski and colleagues (1989a) suggests o v e r a l l poorer functioning than the enti r e present sample from t h i s study. Table 15 POMS Scores for the Allogeneic Group of the Present Sample and a Comparison Sample a Present Sample n (65) Comparison Andrykowski, Data n et a l . , (23) 1989a Variable Mean S.D. Mean S.D. Tension 9.60 7.01 14.6 9.4 Depression 9.39 8.70 13.3 11.3 Anger 9. 00 8.26 12.2 10.9 Vigor 16.77 6.24 16. 0 6.8 Fatigue 9.57 6.47 12.3 6.9 Confusion 6.37 4.59 7.8 5.2 Total Mood Disturbance 59.15 32.96 76.1 43.1 Note. High scores indicate poorer functioning except Vigor. a Allogeneic BMT rec i p i e n t s assessed at a mean of 26 months post-BMT (Andrykowski, et a l . , 1989a)' " Computed as [T+D+A+F+C+(32-V)]. Andrykowski and colleagues (1989a) reported greater mood disturbance and poorer functioning by BMT re c i p i e n t s on a l l subscales of the POMS, with the exception of the Vigor subscale, when compared to the scores of lung cancer patients and t e s t i c u l a r cancer long term survivors. This trend was not e n t i r e l y supported by the findings of the present study. Using the same comparison samples, the allogeneic BMT group from the present sample showed greater depression, anger, and t o t a l mood disturbance than the lung cancer and t e s t i c u l a r cancer groups (see Table 16). The scores of the allogeneic group from the present sample on the tension and confusion subscales suggested poorer functioning than the lung cancer group and better functioning than the t e s t i c u l a r cancer group. Table 16 POMS Scores f o r the Allogeneic Group of the Present Sample and  Two Comparison Samples Present Sample Comparison Data Variable Mean a Mean b Mean c Tension 9.60 8.1 10.7 Depression 9.39 6.2 8.4 Anger 9.00 4.1 8.7 Vigor 16.77 12.6 16.5 Fatigue 9.57 10.8 8.7 Confusion 6.37 5.6 7.1 Total Mood Disturbance d 59.15 47.4 59.1 Note. High scores indicate poorer functioning except Vigor. a Allogeneic group (n=65). D Lung cancer patients (n=56) (McCorkle & Quint-Benoliel, 1983). c T e s t i c u l a r cancer long-term survivors (n=74) (Rieker & E d b r i l , 1985). d Computed as [T+D+A+F+C+(32-V)]. In summary, i t would appear that BMT re c i p i e n t s , both autologous and allogeneic, experience greater tension and confusion than lung cancer patients as measured by the POMS 60 subscales. Autologous BMT rec i p i e n t s seem to experience greater depression and anger than lung cancer patients, and allogeneic BMT re c i p i e n t s seem to experience greater depression and anger than both lung cancer patients and t e s t i c u l a r cancer long-term survivors. Allogeneic and autologous BMT re c i p i e n t s appear to experience greater vigor than both lung cancer patients and t e s t i c u l a r cancer long-term survivors. Allogeneic BMT recipients also appear to experience greater t o t a l mood disturbance than lung cancer patients as measured by the POMS. The r e s u l t s of t h i s study further substantiate the notion that BMT recipients experience a s i g n i f i c a n t degree of psychological d i s t r e s s following BMT, as shown by other researchers (Wolcott, et a l . , 1986; & Andrykowski, et a l . , 1989a & 1989b). General Health Perceptions The conceptual framework for t h i s study proposes that health perceptions are based upon an indiv i d u a l ' s evaluation of function with regard to disease, personal functioning, psychological d i s t r e s s , and s o c i a l functioning (Ware, 1984). When considering the s i g n i f i c a n c e of the impact of i l l n e s s and treatment on general health perceptions, Ware (1984) argues that people behave according to how they f e e l and what they perceive. For t h i s reason, the researcher anticipated that a measure of perceived health and l i f e s a t i s f a c t i o n would y i e l d useful information about how BMT re c i p i e n t s rate t h e i r o v e r a l l health. The findings from both health perception scales seemed to follow the same trend with present health and l i f e s a t i s f a c t i o n rated lower than the average person (see Tables 9 and 10). BMT rec i p i e n t s rated t h e i r present health and l i f e s a t i s f a c t i o n as lower than before t h e i r i l l n e s s as well as lower than the l e v e l of health and l i f e s a t i s f a c t i o n they expected i n s i x months. Although the apparent difference i s marginal, i t i s interesting to note that the rating for anticipated health i s s i m i l a r to the r a t i n g of health for the average person (M = 8.07; M = 8.23); however, BMT recipi e n t s seemed to anticipate attainment of a higher l e v e l of l i f e s a t i s f a c t i o n than the average person over time (M = 8.05; M = 7.56). S e l f ratings of health by BMT recipients are addressed to a l i m i t e d degree i n the l i t e r a t u r e . Hengeveld and colleagues (1988) reported that nine of the seventeen p a r t i c i p a n t s i n t h e i r study described t h e i r "current state as predominantly good" (p. 72). Wolcott and colleagues (1986) asked p a r t i c i p a n t s to rate t h e i r present health as excellent, good, f a i r , or poor, with 52% describing t h e i r present health as good. Comparisons to the r e s u l t s of t h i s study could be made i f one were to accept a score of 5 - 7.5 as an approximation of a r a t i n g of "good" on a 10 point scale. In t h i s case, the mean score on the present health scale of t h i s study (M = 6.75) would suggest that the majority of BMT r e c i p i e n t s i n t h i s sample also rated t h e i r present health as good. Overall, BMT r e c i p i e n t s showed a trend toward a n t i c i p a t i o n of a higher l e v e l of health and l i f e s a t i s f a c t i o n over time. In l i g h t of the comments by Andrykowski and colleagues (1989a) regarding a c e i l i n g l e v e l of functioning that i s l i k e l y reached by BMT r e c i p i e n t s by two years, the findings of t h i s study suggest that the expectations of BMT r e c i p i e n t s may not be congruent with the actual course of recovery following BMT. 62 The Relationship Between Post-BMT Functioning and Time Since BMT The researcher wanted to know more about the relationship between symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions, and length of time since BMT. Although the r e l a t i o n s h i p between post-BMT functioning and time since BMT i s addressed to some extent i n the l i t e r a t u r e , comparisons to the findings of t h i s study are d i f f i c u l t . This i s because the studies reviewed were each quite d i f f e r e n t with regard to the length of time since BMT represented i n the samples, the instruments u t i l i z e d , and the terms and d e f i n i t i o n s used to describe the variables studied (Wolcott, et a l . , 1986; Andrykowski, et a l . , 1989a & 1989b). Andrykowski and colleagues (1989b) did not explore the pattern of change i n psychological distress/well-being i n the f i r s t two years a f t e r BMT, but stated that t h i s was l i k e l y a time of s i g n i f i c a n t improvement i n what they referred to as "psychosocial functioning" (p. 508). Andrykowski and colleagues (1989a) o r i g i n a l l y found a marginal association between time since BMT and what they referred to as "emotional functioning," as measured by the Functional Living Index - Cancer (Schipper, et a l . , 1984). In the subsequent phase of the study (Andrykowski, et a l . , 1989b) i t was suggested that on the whole, BMT patients "may reach a c e i l i n g l e v e l of [overall] functioning within a couple of years following t h e i r transplant...at that time, further improvement or recovery toward an age-appropriate 'normal' status i s l i k e l y to be minimal and e x i s t i n g problems or d e f i c i t s i n functioning are l i k e l y to be longstanding" (p. 508). With regard to physical functioning Andrykowski and colleagues (1989a) reported that physical status of BMT r e c i p i e n t s does not necessarily show improvement with the passage of time. Contrary to the findings of t h i s study, Wolcott and colleagues (1986) reported a negative c o r r e l a t i o n between s e l f -rated health status and time since BMT, suggesting that s e l f -rated health status improved with time. No other correlations between time since BMT and the other psychosocial variables as measured by the POMS and the SAS-SR were reported (Wolcott, et a l . , 1986). The f a i l u r e to demonstrate 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 r e l a t i o n s h i p between time since BMT and aspects of post-BMT functioning suggests that those transplanted several years ago do not experience a difference i n symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions than those i n e a r l i e r phases of recovery. This f i n d i n g i s somewhat congruent with the suggestion by Andrykowski and colleagues (1989b) that BMT r e c i p i e n t s may reach a c e i l i n g l e v e l of functioning around two years post-BMT, and that physical status of BMT recipients may not show improvement with time (Andrykowski, et a l . , 1989a). Because of recent advancements i n the prevention and management of post-BMT complications such as g r a f t versus host disease, i t i s possible that p a r t i c i p a n t s i n t h i s study who were transplanted several years ago experienced more long-term chronic e f f e c t s . Consequently, those patients may have experienced a greater impact on many domains of functioning. r I t i s d i f f i c u l t to explain why the anticipated relationship between the length of time since BMT and symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions was not r e a l i z e d in t h i s study. I t i s important to consider the p o s s i b i l i t y that the four time-frame groups may have d i f f e r e d i n some other way. To explore t h i s p o s s i b i l i t y , additional descriptive data, obtained with the demographic and i l l n e s s and treatment history data c o l l e c t i o n guide, were u t i l i z e d . I t would appear that there are many differences among the four groups based on demographic c h a r a c t e r i s t i c s , o r i g i n a l diagnosis, and i l l n e s s and treatment c h a r a c t e r i s t i c s . Demographically, the groups appear to be d i f f e r e n t with regard to gender, marital status, education, and number of children (see Table 17). Under f i r s t consideration, the four groups appear quite s i m i l a r with regard to age (see Table 20). However, the fourth group i s at least four years since BMT, therefore the average age at the time of BMT i s a c t u a l l y much younger than the other groups. One must consider that these demographic differences might also suggest differences i n o v e r a l l l i f e stage with regard to roles such as parent, spouse and employee. Although i t i s d i f f i c u l t to explore the notion further within the scope of t h i s study, i t i s reasonable to suggest that a variety of l i f e stage factors could have an impact on domains of post-BMT functioning such as s o c i a l / r o l e functioning and psychological distress/well-being. Table 17 Comparison Between Groups Based on Time Since BMT: Demographic  Ch a r a c t e r i s t i c s Months Since BMT: 3 - 12 13 - 24 25 - 48 over 48 n % n % n % n % Gender Female 14 35.90 17 42.5. 12 40.00 18 66. 67 Male 25 64.10 23 57.5. 18 60.00 9 33.33 Ma r i t a l Status Married/Cohabiting 30 76.92 29 72.50 21 70.00 14 53.85 Single 8 20.51 7 17.50 6 20.00 9 34.62 Divorced 0 0.00 2 5. 00 2 6.67 1 3.85 Separated 0 0.00 2 5.00 1 3.33 2 7.69 Widowed 1 2.56 0 0.00 0 0.00 0 0.00 Data Missing 1 Education Gr. 7-9 1 2.56 4 10.00 0 0.00 0 0.00 Gr. 10-12 15 38.46 18 45.00 14 48.28 8 30.77 College 12 30.77 7 17.50 4 13.79 12 46. 15 Uni v e r s i t y 11 28.21 11 27.50 11 37 .93 6 23.08 Data Missing 1 1 Children No 15 39.47 15 38.46 9 31.03 12 46.15 Yes 23 60.53 24 61.54 20 68.97 14 53.85 Data Missing 1 1 In reference to o r i g i n a l diagnosis, the more recently transplanted groups were characterized by proportionately more patients who had chronic myelogenous leukemia, and fewer who had acute myelogenous leukemia (see Table 18). I l l n e s s and treatment h i s t o r y c h a r a c t e r i s t i c s also seemed to d i f f e r among the four groups with regard to type of BMT, whether t o t a l body i r r a d i a t i o n (TBI) had been u t i l i z e d , re-admissions to h o s p i t a l a f t e r BMT, whether medications were being taken currently, and length of h o s p i t a l i z a t i o n for BMT (see Tables 19 and 20). Each of these differences i n i l l n e s s and treatment hi s t o r y c h a r a c t e r i s t i c s might also suggest possible differences i n the groups such as the course of the i l l n e s s , uncertainty pertaining to the a v a i l a b i l i t y of a marrow donor, and p r i o r experience with intensive treatment regimens. I t i s not possible to explore these possible differences further within the context of t h i s study; however, i t i s important to question the impact that these add i t i o n a l factors might have had on aspects of BMT r e c i p i e n t s ' functioning such as symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions. I t i s beyond the scope of t h i s study to explore the e f f e c t that the apparent differences i n the four groups may have had on the findings. The differences i n demographic and i l l n e s s and treatment c h a r a c t e r i s t i c s i n the four groups suggest that there may be other factors that have a s i g n i f i c a n t impact on post-BMT functioning. Areas for future study could be directed toward the exploration of the r e l a t i o n s h i p between such factors as l i f e stage, the course of the i l l n e s s , uncertainty pertaining to the a v a i l a b i l i t y of a marrow donor, and p r i o r experience with intensive treatment regimens, and aspects of post-BMT functioning such as symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions. Table 18 Comparison Between Groups Based on Time Since BMT: Diagnosis Months Since BMT: 3 - 12 13 - 24 25 - 48 over 48 n % n % n % n % Diagnosis AML 6 15.79 8 20.00 8 27.59 8 30.77 ALL 2 5.26 3 7.50 3 10. 34 1 3.85 CML 9 23.68 14 35.00 7 24.14 3 11.54 AA 0 0.00 0 0.00 1 3.45 2 7.69 MM 2 5.26 2 5.00 0 0.00 0 0.00 Other 19 50.00 13 32 . 50 10 34.48 12 46.15 Data Missing 1 1 1 Note. (AML) Acute Myelogenous Leukemia; (ALL) Acute Lymphocytic Leukemia; (CML) Chronic Myelogenous Leukemia; (AA) A p l a s t i c Anemia; (MM) Multiple Myeloma. Furthermore, the reader i s i n v i t e d to consider the l i m i t a t i o n s that the cross-sectional design may have imposed on the findings i n r e l a t i o n to time since BMT, as explored i n t h i s study. A lo n g i t u d i n a l research design would l i k e l y y i e l d useful information because i t would allow the examination of symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions over time within i n d i v i d u a l s rather than among groups of ind i v i d u a l s at a single period i n time. Table 19 Comparison Between Groups Based on Time Since BMT: I l l n e s s and  Treatment History C h a r a c t e r i s t i c s Months Since BMT: 3 - 1 2 1 3 - 2 4 2 5 - 4 8 over 48 n % n % n % n % Type of BMT Autologous 26 66.67 17 42.50 16 53.33 12 44.44 Allogeneic 12 30.77 19 47.50 11 36.67 14 51.85 Syngeneic 0 0.00 0 0.00 1 3.33 1 3.70 Unrelated 1 2.56 4 10.00 2 6.67 0 0.00 TBI Yes 11 28.95 12 31.58 13 43.33 10 37.04 No 27 71.05 26 68.42 17 56.67 17 62.96 Data Missing 1 1 Re-Admitted Since BMT Yes 13 33.33 19 48.72 17 58.62 11 42.31 No 26 66.67 20 51.28 12 41.38 15 57.69 Data Missing 1 1 Medications Yes 17 48.57 22 59.46 16 55.17 17 68.00 No 18 51.43 15 40.54 13 44.83 8 32.00 Data Missing 4 3 1 2 Table 20 Comparison Between Groups Based on Time Since BMT: Current Acre and Length of H o s p i t a l i z a t i o n Months Since BMT: 3 - 1 2 13 - 24 25 - 48 over 48 Mean Mean Mean Mean (S.D.) (S.D.) (S.D.) (S.D.) Current Age 36.90 35.78 36.23 34.33 in Years (8.41) (9.44) (10.41) (7.15) Length of BMT 1.92 2.00 2.45 1.68 H o s p i t a l i z a t i o n i n Months (0.97) (0.64) (1.00) (0.56) The Difference i n Post-BMT Functioning Based on Type of BMT The researcher i s not aware of any previous studies that have examined differences between autologous BMT r e c i p i e n t s and allogeneic BMT r e c i p i e n t s with regard to symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions. In fact, one study did not make e x p l i c i t whether the p a r t i c i p a n t s were autologous, allogeneic, or syngeneic BMT r e c i p i e n t s (Hengeveld, et a l . , 1988), and another only implied that the p a r t i c i p a n t s were allogeneic BMT recipients (Wolcott, et a l . , 1986). There i s evidence i n the l i t e r a t u r e to suggest that the p o t e n t i a l long term complications of allogeneic BMT, such as chronic g r a f t versus host disease (GVHD), could lead to several physical symptoms (Corcoran-Buchsell, 1986). Furthermore, i n order to prevent or control the occurrence of GVHD, those at r i s k for t h i s complication receive several medications that could also r e s u l t i n a v a r i e t y of side e f f e c t s such as hypertension, renal damage, and s i g n i f i c a n t mood swings. Based upon Ware's conceptualization of the poten t i a l impact of disease on everyday functioning (1984), i t i s reasonable to suggest that the experience of s i g n i f i c a n t physical symptoms, an outcome of disease and treatment, could r e s u l t i n poorer functioning i n those who experience them. Because GVHD i s extremely rare i n autologous BMT re c i p i e n t s , the researcher had anticipated that s i g n i f i c a n t differences between the autologous and the allogeneic BMT r e c i p i e n t groups would be substantiated with the findings of t h i s study across a l l of the measures u t i l i z e d . With the exception of psychological distress/well-being, t h i s was not the case. I t i s d i f f i c u l t to explain why the anticipated differences were not r e a l i z e d . I t would seem reasonable to r a i s e the p o s s i b i l i t y that the autologous and allogeneic BMT r e c i p i e n t groups d i f f e r e d i n some other way that had not been proposed by the researcher. To explore t h i s p o s s i b i l i t y , a dditional d e s c r i p t i v e data that had been obtained with the demographic and i l l n e s s and treatment h i s t o r y data c o l l e c t i o n guide were u t i l i z e d . The autologous and the allogeneic BMT r e c i p i e n t groups did not seem to d i f f e r s u b s t a n t i a l l y with regard to gender, marital status, educational l e v e l , whether or not they had children, age, or length of h o s p i t a l i z a t i o n for BMT (see Tables 21 and 22). However, the groups did appear to d i f f e r with regard to diagnosis, whether or not they received t o t a l body i r r a d i a t i o n (TBI), whether or not they were re-admitted to the hospital following BMT, and whether or not they were taking medications (see Table 23). Table 21 S i m i l a r i t i e s Between the Autologous and Allogeneic Groups:  Demographic C h a r a c t e r i s t i c s Autologous Allogeneic n % n % Gender Female 29 40.8 32 49.2 Male 42 59.2 33 50.8 Ma r i t a l Status Married/Cohabiting 50 70.4 44 68.8 Single 17 23.9 13 20.3 Divorced 1 1.4 4 6.3 Separated 2 2.8 3 4.7 Widowed 1 1.4 0 0.0 Educational Level Grade 7-9 1 1.4 4 6.3 Grade 10-12 28 40.0 27 42.2 Community College 19 27.1 16 25.0 University 22 31.4 17 26.6 Children No 28 40.0 23 36.5 Yes 42 60.0 40 63.5 Table 22 S i m i l a r i t i e s Between the Autologous and Allogeneic Groups: Age  and Length of H o s p i t a l i z a t i o n Autologous Allogeneic Subscale Mean S.D. Mean S.D. Current Age 37.24 9.57 34.46 8.28 i n Years Length of BMT 2.06 0.94 2.05 0.87 H o s p i t a l i z a t i o n i n Months The differences between the allogeneic and autologous BMT r e c i p i e n t groups with regard to diagnosis suggest quite d i f f e r e n t experiences with treatment p r i o r to BMT (see Table 23). For example, the majority of parti c i p a n t s i n the allogeneic BMT group had a primary diagnosis of CML. CML i s frequently managed on low doses of o r a l chemotherapy on an out-patient basis. The majority of p a r t i c i p a n t s i n the autologous BMT group had Hodgkin's disease or lymphoma, diseases that are both characterized by more complicated chemotherapeutic regimens that often require h o s p i t a l i z a t i o n . Furthermore, the allogeneic BMT re c i p i e n t s were more l i k e l y to receive TBI, experience re-admission to the ho s p i t a l , and require BMT-related medications than the autologous BMT group. c Table 2 3 Differences Between the Autologous and Allogeneic Groups:  I l l n e s s and Treatment History C h a r a c t e r i s t i c s Autologous n % Allogeneic n % Diagnosis Acute Myelogenous Leukemia Acute Lymphocytic Leukemia Chronic Myelogenous Leukemia 47 14 55 A p l a s t i c Anemia Multiple Myeloma Other a Total Body I r r a d i a t i o n Yes No Re-Admitted to Hospital A f t e r BMT Yes 24 No 46 Taking Medications Yes 29 No 36 13.2 4.4 8.8 0.0 4.2 69.1 20.3 79.7 34.3 65.7 44.6 55.4 21 27 3 1 7 32 32 36 27 43 18 32.3 9.2 41.5 4.6 1.5 10.8 50.0 50. 0 57.1 42.9 70.5 29.5 a Primarily Hodgkin's disease and lymphoma. Some missing data lead to less than 100% responses, Note, b Percentages based on number of responses to item. I t i s c l e a r l y d i f f i c u l t to determine the e f f e c t that these apparent s i m i l a r i t i e s and differences between the two groups may have had on the findings of t h i s study. However, the differences suggest that there may be other factors such as re-admission to the h o s p i t a l and BMT-related medications that could have a s i g n i f i c a n t impact on post-BMT functioning. Although i t i s not possible to explore t h i s matter further within the scope of t h i s study, i t i s important to ra i s e the question "what factors are relat e d to differences i n post-BMT functioning?" Psychological distress/well-being, as measured by the subscales of the POMS, was found to be s i g n i f i c a n t l y d i f f e r e n t between the autologous BMT re c i p i e n t group and the allogeneic BMT re c i p i e n t group at a 0.10 l e v e l of s i g n i f i c a n c e . On each subscale and on the t o t a l mood disturbance c a l c u l a t i o n , autologous BMT rec i p i e n t s scored lower than allogeneic BMT rec i p i e n t s suggesting better functioning (see Table 24). The s i g n i f i c a n t difference between the autologous and allogeneic BMT r e c i p i e n t groups with regard to psychological distress/well-being as measured by the POMS i s consistent with the expectations of the researcher. For the reasons discussed previously, i t was anticipated that the autologous BMT re c i p i e n t group would score lower on the POMS, suggesting better psychological functioning than the allogeneic group. However, t h i s f inding i s not consistent with the r e s u l t s obtained with the other measures, p a r t i c u l a r l y the lack of 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 difference between the two groups with regard to symptoms. For example, prednisone, a drug used with many allogeneic BMT re c i p i e n t s to prevent or control GVHD, i s frequently associated with many symptoms such as muscle wasting, g a s t r o i n t e s t i n a l upset, and s i g n i f i c a n t mood swings. Therefore, the researcher had anticipated differences i n psychological distress/well-being between the two groups based upon the l i k e l i h o o d that autologous BMT rec i p i e n t s would experience fewer symptoms, an assumption that was not supported by the findings of t h i s study. Table 24 Means and Standard Deviations for Scores on the POMS Autologous Allogeneic Variable Mean S.D. Mean S.D. Tension 7.52 4.58 9. 60 7.01 Depression 7.30 7.33 9.39 8.70 Anger 6.42 5.84 9.00 8.26 Vigor 17.59 6.41 16.77 6.24 Fatigue 7.99 6.27 9.57 6.47 Confusion 5.11 3.96 6.37 4.59 Total Mood Disturbance a 48.75 27.61 59.15 32.96 Note. Except for the Vigor Scale, high scores indicate poorer functioning. a Computed as [T+D+A+F+C+(32-V)]. I t i s reasonable to consider the influence that other variables such as i l l n e s s and treatment c h a r a c t e r i s t i c s might have had on the findings, i n t h i s case the difference i n POMS scores between the two groups (see Table 23). For example, could the apparently higher incidence of post-BMT medications and re-admission to h o s p i t a l following BMT i n the allogeneic BMT r e c i p i e n t group explain poorer functioning i n t h i s group as suggested by the higher POMS scores? Once again, i t would appear that factors related to post-BMT functioning need to be i d e n t i f i e d through future research e f f o r t s . Furthermore, the re l a t i o n s h i p between those factors and post-BMT functioning should be explored. Summary At the beginning of t h i s chapter, the demographic, i l l n e s s , and treatment c h a r a c t e r i s t i c s of the sample were described. Then, the r e s u l t s of the des c r i p t i v e analyses were presented i n r e l a t i o n to research questions 1 to 4. Next, the r e s u l t s of the c o r r e l a t i o n a l analyses were presented beginning with the canonical c o r r e l a t i o n , followed by the p r o f i l e analysis, i n r e l a t i o n to research questions 5 and 6, respectively. F i n a l l y , the findings were discussed i n r e l a t i o n to c h a r a c t e r i s t i c s of the data, c h a r a c t e r i s t i c s of the sample, and each of the s i x research questions. Symptoms following BMT were found to be a s i g n i f i c a n t feature of the post-BMT experience. Three categories of symptoms, as measured by the BMT Symptom Distress Inventory, occurred most frequently and were associated with the most d i s t r e s s : sexuality symptoms, j o i n t symptoms, and symptoms i n the miscellaneous category. Personal functioning was found to be at a higher l e v e l i n the sample for t h i s study than another sample of BMT re c i p i e n t s , and at a lower l e v e l than that for a comparison group of renal transplant r e c i p i e n t s . S o c i a l / r o l e functioning was found to be at a higher l e v e l i n the present sample than another sample of BMT re c i p i e n t s , and at a lower l e v e l than a community comparison group. With regard to work for pay, 89.8% of the present sample reported that they were functioning i n t h e i r usual roles and were able to do t h e i r work very well. With regard to psychological distress/well-being, the findings of t h i s study suggest o v e r a l l greater mood disturbance i n BMT r e c i p i e n t s than i n other comparison groups including a normative sample of college student males, and i n some cases, lung cancer patients, t e s t i c u l a r cancer survivors, and bone marrow donors. F i n a l l y , BMT r e c i p i e n t s showed a trend toward a n t i c i p a t i o n of a higher l e v e l of health and l i f e s a t i s f a c t i o n over time. The researcher was not able to substantiate 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 r e l a t i o n s h i p between time since BMT and the aspects of post-BMT functioning that were explored (symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions). Possible differences between the four time-frame groups i n r e l a t i o n to demographic and i l l n e s s and treatment c h a r a c t e r i s t i c s were suggested. The researcher was unable to demonstrate 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 difference between the autologous BMT group and the allogeneic BMT group with regard to symptoms, personal and s o c i a l / r o l e functioning, and general health perceptions. However, 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 difference between the two groups was found with regard to psychological distress/well-being. Although there did not appear to be differences between the two groups based upon demographic c h a r a c t e r i s t i c s , there did appear to be differences i n terms of i l l n e s s and treatment c h a r a c t e r i s t i c s . The researcher sought more information about the r e l a t i o n s h i p between symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions, and length of time since BMT, as well as the difference i n these variables according to type of BMT. Although the anticipated relationships and differences were not demonstrated i n t h i s study, the researcher has suggested that there may be other factors that are pertinent to post-BMT functioning and therefore warrant further study. These factors include l i f e stage with regard to roles such as parent, spouse and employee, primary diagnosis and course of the i l l n e s s , p r i o r experience with intensive treatment regimens, uncertainty pertaining to the a v a i l a b i l i t y of a marrow donor, re-admission to the h o s p i t a l following BMT, and current prescribed medications. In Chapter Five, the study i s summarized, and conclusions are presented. Implications for nursing practice, nursing research, and program development and resource a l l o c a t i o n are also delineated. CHAPTER FIVE Summary, Conclusions, and Implications Introduction This study was designed to address the need for knowledge about the impact of BMT on the l i f e of the i n d i v i d u a l following discharge from the h o s p i t a l . S p e c i f i c a l l y , BMT r e c i p i e n t s were described i n terms of symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions. The r e l a t i o n s h i p between these variables and time since BMT, and type of BMT was also explored. In t h i s chapter, a summary of the study w i l l be presented, conclusions w i l l be drawn, and the findings w i l l be discussed i n terms of implications for nursing practice, nursing research, and program development and resource a l l o c a t i o n . Summary Based upon the l i t e r a t u r e reviewed, i t i s c l e a r that there i s a need to broaden the approach to evaluation of outcomes following i l l n e s s and treatment. In the f i e l d of marrow transplantation, recent studies pertaining to biopsychosocial functioning of BMT survivors suggest that the body of knowledge i s growing. However, there i s s t i l l much to learn about the experience of these indiv i d u a l s following BMT, what t h e i r needs are, and what resources are required to address those needs most e f f e c t i v e l y . Ware (1984) conceptualized a framework to guide the study of disease impact and treatment outcomes. This study was designed to describe BMT r e c i p i e n t s i n r e l a t i o n to each of the health status concepts presented i n Ware's framework (1984). This d e s c r i p t i v e comparative and c o r r e l a t i o n a l study was undertaken with p a r t i c i p a n t s from an accessible population of in d i v i d u a l s who had t h e i r BMT i n one of two western Canadian ho s p i t a l s . A l l e l i g i b l e i n d i v i d u a l s (216) were mailed a package of study materials. One hundred and t h i r t y - s i x i n d i v i d u a l s completed and returned the questionnaires r e s u l t i n g i n a response rate of 66.67%. Some d i f f i c u l t i e s were encountered i n r e l a t i o n to the a v a i l a b i l i t y of correct addresses for several prospective p a r t i c i p a n t s . A l l p a r t i c i p a n t s completed a demographic, i l l n e s s and treatment data c o l l e c t i o n guide, the BMT Symptom Distress Inventory, the SIP, the SAS-SR, the POMS, and two C a n t r i l S e l f -Anchoring Scales for l e v e l of health and l i f e s a t i s f a c t i o n . The data were analyzed through the use of de s c r i p t i v e s t a t i s t i c s , canonical c o r r e l a t i o n , and p r o f i l e analysis. Participants were an average of 35.9 years of age, 27.8 months post-BMT, and the sample was r e l a t i v e l y equable with regard to gender and type of transplant. Several conclusions may be drawn on the basis of the findings of t h i s study. Conclusions Due to the s i z e of the sample, and the proportion of respondents from the accessible population, the findings from t h i s study provide a basis upon which several generalizations about post-BMT functioning may be made. Overall, the experience of symptoms following BMT appears to be common among BMT r e c i p i e n t s . Time elapsed since transplantation or type of transplant do not appear to influence the frequency of symptoms or associated d i s t r e s s . Personal functioning and s o c i a l / r o l e functioning both appear to be affected by the BMT experience. BMT re c i p i e n t s i n the present sample appeared to have more e f f e c t i v e functioning i n both of these areas when compared to other samples of BMT re c i p i e n t s . With regard to personal functioning, BMT recipien t s show les s e f f e c t i v e functioning than renal transplant patients. S o c i a l / r o l e functioning was also less e f f e c t i v e for BMT re c i p i e n t s when compared to community samples (see Table 13). Despite apparent personal and s o c i a l / r o l e performance disturbances i n BMT rec i p i e n t s , a large percentage of individuals reported that they had returned to work and were performing t h e i r work rol e s very wel l . Personal and s o c i a l / r o l e functioning do not appear to be influenced by time since transplant or type of transplant. Psychological distress/well-being also appears to be affected by BMT. Although BMT rec i p i e n t s i n the present sample appeared to have more e f f e c t i v e functioning when compared to other samples of BMT re c i p i e n t s (see Table 15), the degree of mood disturbance experienced by BMT rec i p i e n t s i s greater than that of a healthy community sample. Furthermore, allogeneic BMT re c i p i e n t s scored higher on several of the POMS subscales than BMT donors, lung cancer patients, and i n some cases t e s t i c u l a r cancer survivors (see Table 16), a finding that suggests poorer psychological functioning i n allogeneic BMT r e c i p i e n t s . Although time elapsed since transplantation does not appear to be associated with psychological distress/well-being, type of BMT does appear to be associated with better functioning. S p e c i f i c a l l y , autologous BMT rec i p i e n t s scored lower on the POMS, in d i c a t i n g more e f f e c t i v e functioning than allogeneic BMT r e c i p i e n t s at a 0.10 l e v e l of sig n i f i c a n c e (see Table 24). The reason for t h i s difference i s not cl e a r and suggests a topic for further research. F i n a l l y , perceived l e v e l of health and l i f e s a t i s f a c t i o n appears to be affected by the BMT experience. Overall, BMT re c i p i e n t s reported t h e i r current l e v e l s of health and l i f e s a t i s f a c t i o n as lower than p r i o r to i l l n e s s and lower than the average person (see Tables 9 and 10). However, BMT rec i p i e n t s showed a trend toward a n t i c i p a t i o n of a higher l e v e l of health and l i f e s a t i s f a c t i o n i n the future. Neither time since transplantation or type of transplant appeared to be associated with s e l f - r a t i n g s of health and l i f e s a t i s f a c t i o n . Implications Nursing Practice The findings of t h i s study suggest three implications for nursing p r a c t i c e . F i r s t , nurses play a s i g n i f i c a n t r o l e i n the education of patients and families p r i o r to BMT. Due to the complexity and l i f e - t h r e a t e n i n g nature of the BMT process, necessarily, much emphasis i s placed on the i n i t i a l treatment and recovery phases as patients and families are prepared for t h i s experience. While i t i s true that many ind i v i d u a l s make a f u l l recovery and are e s s e n t i a l l y cured of an otherwise f a t a l i l l n e s s , the findings of t h i s study suggest that the impact of BMT i s f e l t long a f t e r the patient i s discharged from the h o s p i t a l . Furthermore, i t would appear that many realms of functioning are affected a f t e r BMT. I t would seem that nurses, as they educate patients and families about BMT, could also play an important r o l e i n a s s i s t i n g patients and families to adjust t h e i r expectations i n accordance with t h i s r e a l i t y . In t h i s way, 83 patients and families could become more knowledgeable about emotional responses following BMT, return to usual roles, and management of s e l f - c a r e r e s p o n s i b i l i t i e s such as medications and c l i n i c appointments. The f i r s t nursing implication may be expanded into a second important area that has implications for nursing p r a c t i c e . On the basis of the findings of t h i s study, r e h a b i l i t a t i o n following BMT i s c l e a r l y an area that requires further attention. Due to the broad impact of the BMT experience on many aspects of l i v i n g , supportive programs geared toward the s p e c i f i c needs of t h i s c l i e n t group may be planned and implemented. Structured r e h a b i l i t a t i o n programs are a f a m i l i a r resource i n several areas of chronic i l l n e s s care, with cardiac and stroke r e h a b i l i t a t i o n programs as good examples. The findings of t h i s study support the notion that BMT rec i p i e n t s require r e h a b i l i t a t i v e support to manage changes i n physical, s o c i a l , and emotional function following BMT not unlike i n d i v i d u a l s who have experienced a cardiovascular i l l n e s s . Nurses could assume a leadership role i n the planning and implementation of post-BMT r e h a b i l i t a t i o n programs. F i n a l l y , a t h i r d implication for nursing practice concerns the area of symptom assessment and management. The findings of t h i s study point to several symptoms that occur frequently i n the BMT c l i e n t group, and are a source of d i s t r e s s to many of these i n d i v i d u a l s . Some symptoms may be d i f f i c u l t f or patients to discuss, such as problems with sexual function, whereas others, such as fatigue, may be upsetting to the patient but perceived to be l e s s worthy of mention than others that might signal a serious complication. Nurses play an es s e n t i a l r o l e i n the long-term management of BMT re c i p i e n t s i n the ambulatory care s e t t i n g . Therefore, nurses are i n an excellent p o s i t i o n to conduct ongoing assessments of post-BMT patients for the purpose of i d e n t i f i c a t i o n and intervention where symptoms are concerned. I t would follow that nurses who work with these patients must develop expertise i n r e l a t i o n to symptom management i n the BMT . ^ — ' _ c l i e n t group. ^ — <6,V A - V Nursing Research Given the methodological concerns related to t h i s study, i t i s important that i t be re p l i c a t e d . Furthermore, because of the substantial amount of variance due to the instrument items used i n t h i s and previous studies, future research must attempt to i d e n t i f y instruments that are capable of e f f e c t i v e l y measuring the aspects of post-BMT functioning that were addressed i n t h i s study. Although the study provided information for the description of BMT r e c i p i e n t s , future research must consider the l i m i t a t i o n s of the cross-sectional design when studying the impact of BMT on the i n d i v i d u a l over time. A prospective, longitudinal design would allow a more comprehensive assessment of the impact of BMT on the health status of i n d i v i d u a l s . A baseline assessment p r i o r to BMT, followed by further assessments at various points i n time during the post-BMT recovery period would provide useful information about the impact of BMT over time, within il^rvTdu^Ts^^rather than between groups of i n d i v i d u a l s at a sin g l e period i n time. Furthermore, i t i s important to mention the r o l e that q u a l i t a t i v e research methods could play i n addressing the need for knowledge about the post-BMT experience. I t i s possible that q u a l i t a t i v e methods could reveal s i g n i f i c a n t themes about the post-BMT experience from the perspective of BMT r e c i p i e n t s that have not been accessed by quantitative research designs. The f a i l u r e to substantiate a r e l a t i o n s h i p between post-BMT functioning and time since BMT and, i n most cases, type of BMT i s a finding that compels one to question what factors a f f e c t post-BMT functioning. On the basis of the findings of t h i s study, i t would appear that the r e l a t i o n s h i p between symptoms and various aspects of post-BMT functioning should be explored further i n an e f f o r t to answer t h i s question. Although previous research has pointed toward age as one of the factors a f f e c t i n g post-BMT functioning (Andrykowski, et a l . , 1989a), the question remains e s s e n t i a l l y unanswered. Cor r e l a t i o n a l analysis i n future studies could be directed toward t h i s question and would l i k e l y provide useful information i n t h i s regard. 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 r e l a t i o n s h i p between type of BMT and psychological distress/well-being was found i n t h i s study. On the basis of t h i s finding, one might conjecture that i n d i v i d u a l s who have an autologous BMT are l i k e l y to experience les s psychological d i s t r e s s than those who have had an allogeneic BMT. Because no other s t a t i s t i c a l l y s i g n i f i c a n t differences were found between these two groups i n t h i s study, future investigations could attempt to explore the difference i n psychological functioning i n the two groups further. I f other factors beyond the type of BMT could be i d e n t i f i e d , the findings of such a study would provide useful information for the purpose of psychological screening as well as a n t i c i p a t i o n of the need for psychological intervention. F i n a l l y , the area of symptom management provides several opportunities for further study of the post-BMT c l i e n t group. Studies directed toward the i d e n t i f i c a t i o n of interventions that are e f f e c t i v e i n reducing the frequency of symptoms and the d i s t r e s s associated with symptoms would lead to knowledge that would enhance nursing practice i n t h i s area of patient care. The information pertaining to the most frequent and most d i s t r e s s i n g symptoms gained as a r e s u l t of t h i s study could be used to i d e n t i f y several areas of p r i o r i t y for future investigations of t h i s nature. Program Development and Resource A l l o c a t i o n The findings of t h i s study also suggest implications for program development and resource a l l o c a t i o n . The findings serve to substantiate the notion that i n d i v i d u a l s experience a variety of i l l n e s s and treatment outcomes i n r e l a t i o n to symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions following BMT. In accordance with Ware's conceptualization of the impact of disease (1984), and the r e s u l t s of t h i s study, i t i s c l e a r that the care and management of BMT r e c i p i e n t s must be structured around a broader view of o v e r a l l health status variables such as those addressed i n t h i s study. In order to f a c i l i t a t e a s a t i s f a c t o r y re-entry into l i f e a f t e r BMT, i t i s e s s e n t i a l that the challenges and needs of i n d i v i d u a l s following BMT are i d e n t i f i e d and addressed. Programs geared toward the r e h a b i l i t a t i v e needs of BMT r e c i p i e n t s must expand beyond the present focus on biophysiological issues such as bone marrow recovery and BMT-related complications such as GVHD. The findings of t h i s study suggest that r e h a b i l i t a t i v e e f f o r t s must also be directed toward a wide v a r i e t y of symptoms such as fatigue, j o i n t pain, and muscle weakness, as well as other aspects of i l l n e s s and treatment outcomes, such as r o l e functioning and psychological d i s t r e s s . As with a l l health care programs, budgets must be established and adhered to within an environment of f i n a n c i a l constraint. The r o l e of BMT i n the treatment of l i f e - t h r e a t e n i n g i l l n e s s w i l l continue to be examined and documented i n order to substantiate i t s place i n the competition for health care d o l l a r s . However, i t i s important that broader dimensions of i l l n e s s and treatment outcomes following BMT, such as the variables explored i n t h i s study, also receive c a r e f u l examination and documentation. This w i l l help to substantiate the need for resources to f a c i l i t a t e program planning that i s directed toward the r e h a b i l i t a t i v e needs of t h i s c l i e n t group. In conclusion, t h i s study was developed to address the need for knowledge about BMT r e c i p i e n t s i n terms of symptoms, personal and s o c i a l / r o l e functioning, psychological distress/well-being, and general health perceptions. 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Transplantation. 41, 478-484. 93 Appendices Appendix A: Summary of Post-BMT Symptoms I d e n t i f i e d from the Literature 95 Summary Of Post-BMT Symptoms I d e n t i f i e d From The Lit e r a t u r e a O r a l Changes S k i n Chanqes M u s c u l o s k e l e t a l o r a l mucositis alopecia Chanqes o r a l s i c c a rashes j o i n t contractures erythema induration muscle weakness ulceration i r r i t a t i o n pain i n muscles lesions n a i l ridging pain i n j o i n t s reduced s a l i v a i t c h i n g j o i n t swelling flow excessive sweating decreased range of lich e n planus tightness motion candidiasis mucous membrane osteoporosis gum disease abnormalities (women) increased plaque burning j o i n t effusions formation patchy aseptic necrosis of pain hyperpigmentation j o i n t s l i p u l c e r a t i o n mottled appearing ar t h r a l g i a s tooth decay/caries dyspigmentation polymyositis burning erythema myositis atrophy roughness and Male/Female I n t e s t i n a l Chanqes flakiness S e x u a l i t y dysphagia desquamation impotence esophagitis skin ulceration early menopause e n t e r i t i s dryness vaginal retrosternal pain lichen-planus inflammation esophageal lesions vaginal dryness s t r i c t u r e s or scleroderma vaginal s t r i c t u r e webbing skin thickening formation weight loss N e u r o l o g i c Changes vaginal adhesions inadequate food seizures obstruction to intake confusion menses flow steatorrhea diplopia vaginal atrophy diarrhea personality changes sexual dysfunction anorexia lethargy R e s p i r a t o r y Chanqes abnormal appetite somnolence s i n u s i t i s don't enjoy food dementia dry cough nausea and ataxia I n f e c t i o n s vomiting photophobia herpes zoster burning of throat learning s k i l l s v a r i c e l l a when swallowing impairment herpes zoster pain O c u l a r Chanqes long or short-term post-herpetic pain cataracts memory loss fatigue i n s u f f i c i e n t tear P s y c h o l o g i c a l c h i l l s production Changes t i n g l i n g ocular sicca depression abdominal pain burning anxiety nausea and vomiting itching fear fever g r i t t i n e s s g u i l t lung i n f e c t i o n photophobia anger sinus i n f e c t i o n pain Sensory Chanqes Energy L e v e l changes i n taste Changes loss of smell fatigue Note. d (Corcoran-Buchsell, 1986; Deeg, et. a l . , 1988; Nims, et a l . , 1988) Appendix B: P r o f i l e of Mood States (POMS) fSCAMTVON FOBMNO T.I01258-POMS nATF SEX: Male @ Female © Below is a list of words that describe feelings people have. Please read each one carefully. Then fill in ONE circle under the answer to the right which best describes HOW YOU HAVE BEEN FEEUNG DURING THE PAST WEEK INCLUDING TODAY. The numbers refer to these phrases. 0 = Not at all 1 = A little 2 = Moderately 3 - Quite a bit 4 = Extremely Col © O.P. @ t P 5 S S £ 5 2 | t- t a t SE o -1 o a x Z « 2 O UJ 21. Hopeless © O © ® © 22. Relaxed © © © © © © 0 0 0 0 0 0 b © 0 © © 0 0 © © 0 . © Q © © 0 © © 0 0 0 97 ©©©©©©©©©© © 0 0 © 0 © © 0 © © © 0 0 © © © © © © ©  ©Q©©©©©©©© ©©©©©©©©©© < h ^ m i - - i £ * < t S UJ £ i h t a t f | o -> o 2 5 Z < 5 O UJ 45. Desperate ® O © © 0 | 46. Sluggish ©0©®©! 1. Friendly 2. Tense d d s 5 5 £ S 2 | i_ t a t E 5 Q 2 K Z < S O UJ ® © ® ® © ® O © © 0 23. Unworthy ® 0 ® ® 0 24. Spiteful ® 0 © ® © 47. Rebellious © © © © © 48. Helpless ® O ® ® 0 25. Sympathetic ® O ® ® 0 26. Uneasy ® © 0 ® 0 49. Weary ® O © ® 0 50. Bewildered ® O © ® 0 3. Angry 4. Worn out. .©©©©© ®o©®© 27. Restless ® Q ® ® © 28. Unable to c o n c e n t r a t e . ® ® ® ® © 51. Alert ® O ® ® 0 52. Deceived ® O © ® 0 5. Unhappy 6. Clear-headed ©O©©© ®o©®© 29. Fatigued. 30. Helpful . © © © © © © © © © © 53. Furious © © © © © 54. Efficient ® O © © 0 7. Lively 8. Confused ©©©©© ®o©©© 31. Annoyed 32. Discouraged ©©©©© ©©©©© 55. Trusting ® O © ® 0 56. Full of pep © O © © © 9. Sorry for things done 10. Shaky © O ® ® © ® O © © 0 33. Resentful 34. Nervous © © © © © . © © © © © 57. Bad-tempered ® O © @ 0| 58. Worthless © © © © 0 11. Listless 12. Peeved ® O ® ® 0 .©©©©© 35. Lonely 36. Miserable .©©©©© © © © © © 59. Forgetful © O © © © 60. Carefree ® O ® ® 0 13. Considerate 14. Sad ® O © ® 0 ®©©®© 37. Muddled 38. Cheerful © O © ® © ® ® © ® 0 61. Terrified ® O © ® 0 62. Guilty ® O 0 ® 0 15. Active 16. On edge ® O ® ® 0 ® O © © 0 39. Bitter 40. Exhausted . © © © © © ® © @ © © 63. Vigorous ® 0 © © 0 64. Uncertain about things ® O © © 0 17. Grouchy 18. Blue ® ® ® ® 0 ® © © @ © 41. Anxious 42. Ready to fight ®o©@© ®o©@© 65. Bushed ® O © ® 0 i 19. Energetic 20. Panicky ®o©®© © O © ® © 43. Good natured 44. Gloomy © © © © © © O © © © MAKE SURE YOU HAVE ANSWERED EVERY ITEM. \y POM 02 1 Appendix C: C a n t r i l Self-Anchoring Scales for Level of Health and Level of L i f e S a t i s f a c t i o n ID (1-3) Q u e s t i o n n a i r e No 5 (4) CANTRIL SELF-ANCHORING SCALE INSTRUCTIONS: Think about what, f o r you, would be the h i g h e s t l e v e l o f h e a l t h . Next, t h i n k about what you f e e l i s t h e lowest l e v e l o f h e a l t h . Below i s a p i c t u r e of a la d d e r . The h i g h e s t l e v e l o f h e a l t h t h a t you have j u s t thought about i s t h e t o p o f the l a d d e r ( i . e . 10) . The lowest l e v e l of h e a l t h t h a t you have j u s t thought about i s a t the bottom ( i . e . 1). 10 Best L e v e l Of H e a l t h Worst L e v e l Of H e a l t h 1. On which step o f the la d d e r would you say you are r i g h t now? (Ple a s e w r i t e down the' number of the step) (6) 2. On which st e p o f the la d d e r were you bef o r e you became i l l and r e q u i r e d treatment? (7) 3. On which step o f the la d d e r do you expect t o be s i x months from now? (8) 4. On which step o f the la d d e r would you say the h e a l t h o f the average person you age i s ? _(9) Note. From The P a t t e r n of Human Concerns (p. 22) by H. C a n t r i l , 1965. New Brunswick: Ruthers U n i v e r s i t y P r e s s . M o d i f i e d f o r use. ID (1-3) Que s t i o n n a i r e No 6 (4) CANTRIL SELF-ANCHORING SCALE INSTRUCTIONS: Think about what, f o r you, would be t h e h i g h e s t l e v e l o f l i f e s a t i s f a c t i o n . Next, t h i n k about what you f e e l i s the lowest l e v e l o f l i f e s a t i s f a c t i o n . Below i s a p i c t u r e o f a l a d d e r . The h i g h e s t l e v e l of l i f e s a t i s f a c t i o n t h a t you have j u s t thought about i s the top of the ladder ( i . e . 10). The lowest l e v e l of l i f e s a t i s f a c t i o n t h a t you have j u s t thought about i s a t the bottom ( i . e . 1). 10 Best L e v e l Of L i f e S a t i s f a c t i o n Worst L e v e l Of L i f e S a t i s f a c t i o n 1. On which st e p o f the ladder would you say you a r e r i g h t now? (P l e a s e w r i t e down the number of the step) (6) 2. On which s t e p o f the ladder were you before you became i l l and r e q u i r e d treatment? (7) 3. On which s t e p o f the ladder do you expect t o be s i x months from now? (8) 4. On which s t e p o f the ladder would you say the l i f e s a t i s f a c t i o n o f the average person you age i s ? (9) Note. From The P a t t e r n o f Human Concerns (p. 22) by H. C a n t r i l , 1965. New Brunswick: Ruthers U n i v e r s i t y Press.. M o d i f i e d f o r use. 101 Appendix D: Sickness Impact P r o f i l e (SIP) 102 ID (1-3) Questionnaire No 31 and 32 Sickne Impact P r o f i l e Copyright • 1977 HARILYN BERGiNER S l P - 1 0 0 0 0 SO H D « * » SO 11-0345* THE FOLLOWING INSTRUCTIONS ARE FOR THE SELF-ADMINISTERED QUESTIONNAIi-103 PLEASE READ THE ENTIRE INTRODUCTION BEFORE YOU READ THE QUESTIONNAIRE. IT IS. VERY IMPORTANT THAT EVERYONE TAKING THE QUESTIONNAIRE FOLLOWS THE SAME INSTRUCTIONS. You have certain a c t i v i t i e s that you do i n carrying on your l i f e . Sometimes you do a l l of these a c t i v i t i e s . Other times, because of your state of health, you don't do these a c t i v i t i e s i n the usual way: you may cut some out; you may do some for shorter lengths of time; you may do some i n d i f f e r e n t ways. These changes in your a c t i v i t i e s might be recent or longstanding. We are interested in learning about any changes that describe you today and are related to your state of health. This questionnaire booklet l i s t s statements that people have told us describe them when they are not completely well. Whether or not you consider yourself sick, there may be some statements that w i l l stand out because they describe you today and are related to your state of health. As you read the questionnaire, think of yourself today. When you read a statement that you are sure describes you and i s related to your health, place a check on the line to the r i g h t of the statement. For example: I am not driving my car (026-031) If you have not been driving for some time because of your health, and are s t i l l not driving today, you should respond to t h i s statement. On the other hand, i f you never drive or are not driving today because your care i s being repaired, the statement, "I am not driving my car" i s not related to your health and you should not check i t . If you simply are dri v i n g less, or are driving shorter distances, and f e e l that the statement only p a r t i a l l y describes you, do not check i t . In a l l of these cases you would leave the lin e to the right of the statement blank. For example: I am not driving my car (026-031) Remember that we want you to check t h i s statement only i f you are sure i t describes you today and i s related to your state of health. Read the introduction to each group of statements and then consider the statements in the order l i s t e d . While some of the statements may not apply to you, we ask that you please read a l l of them. Check those that describe you as you go along. Some of the statements w i l l d i f f e r only in a few words, so please read each one c a r e f u l l y . While you may go back to change a response, your f i r s t answer i s usually the best. Please do not read ahead in the booklet. Once you have started the questionnaire, i t i s very important that  you complete i t within one day (24 hours) . If you find i t hard to keep your mind on the statements, take a short break and then continue. When you have read a l l of the statements on a page, put a check in the BOX in the lower right-hand corner. If you have any questions, please refer back to these instructions. Please do not discuss the statements with  anyone, including family members, while doing the questionnaire. Now turn to the questionnaire booklet and read the statements. Remember we are interested in the recent or longstanding changes in your a c t i v i t i e s that are related to your health. I D (1-3) Que s t i o n n a i r e 104 No 31 (4-5) ( S 0 4 9 9 ) P L E A S E RESPOND TO (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE SURE D E S C R I B E YOU TODAY AND ARE RELATED TO YOUR STATE OF H E A L T H . 1. I spend much of the day lying down in order to rest 2. I s i t during much of* the day 3. I am sleeping or dozing most of the time - day and night 4. I l i e down more often during the day in order to rest 5. I s i t around half-asleep 6. I sleep less at night, for example, wake up too early, don't fa l l asleep for a long time, awaken frequently 7. I sleep or nap more during the day (C 70-o e 3 ) V ' (6) ( 0 S 2 - 0 U 9 ) ( 7 ) ( 0 6 3 - i 0 <• ) ( 0 6 S - 0 5 S ) ( S ) (9) ( 0 6 5 - 0 8 . ) ( 1 0 ) ( 0 6 9 - 0 6 1 ) (1 1) ( 0 7 1 - 0 6 0 ) ( 12) CHECK HERE WHEN YOU HAVE READ A L L STATEMENTS ON T H I S PAGE 105 (M-0 7 19) P L E A S E RESPOND TO ( C H E C K ) QhLl THOSE STATEMENTS THAT YOU ARE iUR£ D E S C R I B E YOU TODAY AND ARE RELATED TO YOUR STATE OF H E A L T H , 1. I am getting around only within one building 2. I stay within one room 3. I am staying in bed more 4. I am staying in bed most of the time 5. I am not now using public transportation 6. I stay home most of the time 7. 1 am only going to places with restrooms nearby 8. I am not going into town 9. I stay away from home only for brief periods of time 10. I do not get around in the dark or 1n unlit places without someone's help 1 3 U - 0 8 6 ) (13) 1 2 8 - 1 0 6 ) (14) 1 3 0 - 0 8 1 ) ( 1 5 , 1 3 1 - 109) (16) 1W0-01.1) (17) I 3 3 - 0 6 6 ) (18 ) 1 2 5 - 0 5 6 ) (19) 1 2 H - 0 W 8 ; (20) 1 3 9 - 0 5 * * ; (21) 1 2 1 - C 7 2 ) (22) CHECK HERE WHEN YOU HAVE READ A L L STATEMENTS ON T H I S PAGE -11-106 ( S I - U 5 O ) P L E A S E R E S P O N D T O ( C H E C K ) O N L Y T H O S E S T A T E M E N T S T H A T Y O U A R E SURE D E S C R I B E Y O U T O D A Y A N D A R E R E L A T E D T O Y O U R S T A T E O F H E A L T H . 1. I am going out less to visit people 2. I am not going out to visit people at all 3. I show less interest in other people's problems, for example, don't listen when they tell me about their problems, don't offer to help 4. I often act irritable toward those around me, for example, snap at people, give sharp answers, criticize easily 5. I show less affection 6. I am doing fewer social activities with groups of people 7. I am cutting down the length of visits with friends 8. I am avoiding social visits from others 9. Hy sexual activity is decreased 10. I often express concern over what might be happening to my health 1 1 . I talk less with those around me 12. I make many demands, for example, insist that people do things for me, tell them how to do things 1 3 . I stay alone much of the time 1 4 . I act disagreeable to family members, for example, I act spiteful, I am s t u b b o r n 15. I have frequent outbursts of anger at family members, for example, strike at them, scream, throw things at them 16. I isolate myself as much as \ can from the rest of the family 0 2 8-0 2 9. Oku) (23) 101) (24) 0 0 3 - 0 6 7 ) (25) 0 1 5. 0 0 7. 0 1 2. 0 2 7. 0 3<*. 0 3 9. 0 1 8 . 0 0 2-0 3 8 . 0 2 3 . • 0 8 *4 } (26) •052) (27) •036) (28) • (29) • 0 8 0 ) (30) • 051) (31) .0 5 2 ; (32) •0 5 6 } (33) .oae) (34) 0 6 6 ( 3 5 ) 2W9-0SS;: (36) :0 (37) 2 3 : - : : : ' (38) - 1 2 -107 ( C O N T I N U E D F R O M P A G E 11) 17. I am paying less attention to the children 18. I refuse contact with family m e m b e r s , for example, t u r n away from them 1 9 . I am not doing the things I usually do to take care of my children or family 20. I am not joking with family members as I usually do ( 2 3 8 . 0 6 - ) ( 3 9 ) ( 2 5 6 - 1 1 5 ) ( 4 0 ) ( 2 W 2 - 3 7 S ) ( 4 1 ( 2 5 5 - 0 W 3 ) ( 4 2 C H E C K H E R E WHEN Y O U H A V E R E A D A L L S T A T E M E N T S ON T H I S P A G E -13-ID Q u e s t i o n n a i r e No 32 108 (4-5) (A-08W2) PLEASE RESPONI TO (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE S U R E DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. 1. I walk shorter distances or stop to rest often 2. I do not walk up or down hills I use stairs only with mechanical support, for example, handrail, cane, crutches I-walk up or down stairs only with assistance from someone else 5. I get around in a wheelchair 6. I do not walk at all 7. I walk by myself but with some difficulty, for example, limp, wobble, stumble, have stiff leg 8. I walk only with help from someone 9. I go up and down stairs more slowly, for example, one step at a time, stop often' 10. I do not use stairs at all 11. I get around only by using a walker, crutches, cane, walls, or furniture 12. I walk more slowly ( oso -oue ) (6) (0W 6 - 0 56 ) ( 7) (0W2- 0 6 7) (8) (0Ut»- 0 7 6 ) (9) ( 0 S 7 - 0 9 6 ) ( 10) ( 0 5 2 - 1 0 5 ) ( N ) ( 0 W 9 - 0 S 5 ) ( 1 2 ) ( 0 5 3 - 0 8 S ) (13) ( O U O - O S O ( 1 4 ) ( o w l - O S 3 ) (15) ( C 7 - 0 7 C ) ( 1 6 ) ( l E l - 0 3S) (17) CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE -14-109 ( A B - 0 7 7 ? ) PLEASE RESPOND TO (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH, 1. I am confused and start several actions at a time (223-090) (18) 2. I have more minor accidents, for example, drop things, trip and fal l , bump into things ( 2 3 U - 0 7 S ) (19) 3. I react slowly to things that are said or done (2 2 8-0 59 ) (20) 4. I do not finish things I start ( 2 2 7 - 0 6 7 ) (21) I have difficulty reasoning and solving problems, for example, making plans, making decisions, learning new things (22W-0 80 (22) 6. I sometimes behave as i f I were confused or disoriented 1n place or time, for example, where I am, who 1s around, directions, what day it is ( 2 3 1 - 1 1 3 ) (23) 7. I forget a lot, for example, things that happened recently, where I put things, appointments ( 22 2-0 78 ) (24) 8. I do not keep my attention on any activity for long ( 2 2 0-0 6 7 ) ( 2 5 ) 9. I make more mistakes than usual ( 2 2 5-060 (26) 10. I have difficulty doing activities involving concen-tration and thinking ( 2 1 7 - 0 8 0 ) C27) CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE - 1 5 -( R P - : U 2 2 ) THIS GROUP OF STATEMENTS HAS TO DO WITH ACTIVITIES YOU USUALLY DO IN YOUR FREE TIME. THESE ACTIVITIES ARE THINGS THAT YOU MIGHT DO FOR RELAXATION, TO PASS THE TIMEJ OR FOR ENTERTAINMENT. PLEASE RESPOND TO (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH. 1. I do my hobbies and recreation for shorter periods of time ( 2 1 5-0 3 9 ) ( 2 8 ) 2. Tarn going out for entertainment less often (2U-0 36 ) (29) 3. I am cutting down on some of my usual inactive recreation and pastimes, for example, watching TV, playing cards, reading (20 7 _ o s 9 ) (30) 4. I am not doing any of my usual inactive recreation and pastimes, for example, watching TV, playing cards, reading (20 9-oaw) (31) 5. I am doing more inactive pastimes 1n place of my other usual activities ( 2 1 1 - 0 5 1 ) 0 2 ) 6. I am doing fewer community activities ^ - j (216-0 3 3) (33) 7. I am cutting down on some of my usual physical recreation or activities (210-0u3)(34) 8. I am not doing any of my usual physical recreation or activities (209-0?7)(35) CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE •19-• I l l (E-C 70 £ ) PLEASE RESPOND TO (CHECK) ONLY THOSE STATEMENTS THAT YOU ARE SURE DESCRIBE YOU TODAY AND ARE RELATED TO YOUR STATE OF HEALTH, 1. I am eating much less than usual I feed myself but only by using specially prepared food or utensils I am eating special or different food, for example, soft food, bland diet, low-salt, low-fat, low-sugar 4. I eat no food at all but am taking fluids 5. I just pick or nibble at my food 6. I am drinking less fluids 7. I feed myself with help from someone else 8. I do not feed myself at a l l , but must be fed 9. I am eating no food at a l l , nutrition is taken through tubes or intravenous fluids ( 0 8 5-0 3 7 ) ( 3 6 ) ( O73-07?) (3; ( : S 1 - 0 u 3 ) (38) (0 7 7- 1 0 O ( 3 9 ) ( 0 8 3 - 0 S 9 ) ( 4 Q (0 8 0-0 3 6 )(41 (0 7<.-0 9 9 )(42) ( 0 7 5 - 1 1 7 X43) ( 0 7 6 - 1 3 :]U4) CHECK HERE WHEN YOU HAVE READ ALL STATEMENTS ON THIS PAGE -20-NOW, PLEASE REVIEW THE QUESTIONNAIRE TO BE CERTAIN YOU HAVE FILLED OUT ALL THE INFORMATION. LOOK OVER THE BOXES ON EACH PAGE TO MAKE SURE EACH ONE IS CHECKED SHOWING THAT YOU HAVE READ ALL OF THE STATE-MENTS. IF YOU FIND A BOX WITHOUT A CHECK, THEN READ THE STATEMENTS ON THAT PAGE. Appendix E: So c i a l Adjustment Scale - Self Report (SAS ID (1-3, 1 1 4 Questionnaire No 4 J ( 4 ) SOCIAL ADJUSTMENT SELF REPORT QUESTIONNAIRE We are interested in finding out how you have been doing in the last TWO weekz. We would like you ;o answer some Questions about york work, spare time and your family life. There are no rignt or wrong answers to dies* questions. Check the answers that best describes how you have been in the last rwo » v « « . WORK OUTSIDE THE HOME Pleas* check die situation chat best describes you. lam i Q a worker for pay * • retired d«) 2 O a housewife S G unemployed 3 • a student Do you usually work for pay more than IS hours per week? 1 • YES 2 C NO (is) Oid you work any hours for pay in dia last two weeks? 1 • YES 2 • NO u«> Chick thi tnswtr rtaf otsT ditcribts how you Aavr bun in On list two wrtki. 1. How many days did you miss from work in tht last two weeks? iG Nodaysmisad. (IT) 2 • One day. 3 G I missed about half the time. 4 • Missed more man half the timi but did makt at least one day. 5 • I did not work any days. 8 • On vacation all of the last two weeks. If you htve not worked my diys in [hi Itst rwo waeks. go on to Qutsu'on 7. 2. Haw you ba«n abla to do your work in tht last 2 weeks? 1 G I did my work very well. (IS) 2 G I did my work wall but had some minor problims. 3 G I needed help with work and did not do well about half the timi. 4 G I did my work poorly most of thi time. 5 G I did my work poorly ail the time. 3. Htvt you been ashamtd of how you do your work in ttie last 2 weeks? 1 G I navtr felt ashamed. (19) 2 G Once or twice I fait a little ashamed. 3 G About half the time I felt ashamed. 4 G I fait ashamed most of tne time. 5 G I ?alt ashamed'all the time. 4. Have you had any araumans widl ptopie at work in the last 2 weekt? 1 G I had no arguments and got along very well. co> 2 G I usually got along well but had minor arguments. 3 Q t had more man one argument. 4 G I had many arguments. 5 Q I was constantly i n arguments. S. Have you fait upset, worried, or uncomfortable while doing your work during dia last 2 wxks? 1 • I never fait upset, c 2 G Once or twice I tell upsat. 3 • Half the time I (alt upset. 4 G I felt upset most of tha time. 5 • I felt uptat all of tha time. S. Have you found your work interesting these last two weeks? 1 • My work was almost aiwsys interesting. 2 G Once or twice my work was not interesting. 3 G Half the time my work was uninteresting. 4 G Most of the time my work was uninteresting. 5 0 My work was always uninteresting. WORK AT HOME - HOUSEWIVES ANSWER QUESTIONS 7-12. OTHERWISE. 60 ON TO QUESTION 13. 7. How many days did you do some housawork during die last 2 weeks? 1 Q Every day. C*> 2 0 I did the housework almost ivary day. 3 0 I did the housework about half the time. 4 O I usually did not do the housework. _ • 5 G I was completely unable to do housework. 8 Q I was away from home all of rhe las: two weeks. t. Ouring tha last two weeks, have you kept up with your housawork? This indudes cooking, cleaning, laundry, grocery shopping, and errands. I D I did my work very well. C*> 2 G I did my work wall but had some minor problems. 3 G I needed help with my work and did not do it well about half me time. 4 • I did my work poorly most of tha time. 5 G 1 did my work poorly all of the time. S. Have you been ashamed of how you did your housework during Che lest 2 weeks? 1 Q I never felt ashamed. 2 G Onci or twice I felt i litde ashamed. 3 C About half the time I felt asnamea. 4 G I felt asnamed most of the time. 5 G I felt asnamed all the time. Cl) k_*lt T l 115 | Siudy j Paucni Numtxi P i u t o t I m u i i i |21 SASSR-Patient Paoa 2 of 6 j 1 ! 1 ! Depression Research Unit SOCIAL A D J U S T M E N T SELF REPORT QUESTIONNAIRE (Paoa 2 of 6) 10. H m you hid my arguments with salespeople, tredeimen or neighbors in the last 2 w»eks? 1 C I had no arguments and got ilong very will. (2S> 2 C I usually gol along well, but hid minor irguminrs. 3 G I hid more rhin oni argument 4 G I hid miny arguments. 5 C I was constantly in irgviments. 11. Have you fait upset while doing your housework during On Int 2 w«*ks? 1 C I navar fait upsat. (2?) 2 G Onca or twice I tilt uosat. 3 C2 Hill th t time I (alt upset. 4 • I fait upset most of rha time. 5 G I fait upat all of the time. 12. Haw you found your housawork interesting these last 2 walks? 1 G My work was almost always interesting. (28) 2 G Onca or twice my work was not interesting. 3 G Hall the tima my work wis uninteresting. 4 G Mori of the time my work was uninteresting. 5 G My work was always uninteresting. FOR STUOENTS Answer Questions 13-13 il you jo to school htlf time or mon. Ottitrxria, jo on to Question IS. Whet best describes your school program? (Choose one) 1 G Full Time (29) 2 G 3/4 Time 3 G Half Time Check tht tnswtr that best describes now you nave been the lest 2 weks. 13. How m a n y d a y s of d e s s a s d i d you m i s s in tht l a s t 2 w M k s ? 1 G No days minad. (30) 2 C A few days mined. 3 G I misad about half rha time. *G Misad more than naff time but did make at laast one day. 5 G I did not go to clasas at all. 8 G l was on vacation ill of the last two weeks. 14. Have you bt«n able to keep up with your dess work in the ten 2 w««ks? 1 Q I did my work very well. (3D 2 Q 1 did my work well but had minor problems. i 3 G I needed halo with my work ano did not do well about half the time. 4 I did my work poorly most of tne time. j 5 G I did my work poorly all the time. j I 15. Ounnj die last 2 wtakj, have you bna ashamed of how you do your school work? (32) \ • I never felt ashamed. 2 G Once or twice I felt ashamed. 3G About half the time I felt ashamed. 4 G I felt ashamed most of the time. 5 G I felt ashamed all of the time. 16. Have you hid any arguments with people at school in die last 2 weeks? 1 G I had no arguments and got along very well. (33) 2 G I usually got along wall but had minor arguments. [ 3G I had more than one argument. | 4 G I hid many arguments. j 5 G I was constantly in arguments. 8 G Not applicable: I did not attend school. 17. Have you felt upset at school dunng the last 2 w*«ks? 1G I never felt uosat. (3«> j 2G Once or twice I felt upsat. j 3C Half the time I felt upsat. | 4 C t felt upsat most of the time. SG I 'tit upsat all of the time. 8G Not applicable; I did not attend school. 11. Have you found your school work interettine. these last j 2 weeks? ! i G My work was almost always interesting. (3S> j 2G Once or twice my work was not interesting. j 3G Half the time my work was uninteresting. 1 4 G Most of the time my work was uninterestin; , 5C My work was always uninteresting. I 116 Study j P a U c n l N u m b e r P i a c n t I n i l U i i 21 SAS-SR-Patient Pag* 3 of 6 1 1 Dapreuion R«M*rch Unit S O C I A L A D J U S T M E N T S E L F R E P O R T Q U E S T I O N N A I R E (Paoa 3 of S) SPARE TIME - E V E R Y O N E ANSWER QUESTIONS 19-27. Check the mswer met best aescribes hour you htvt been in the lest 2 weeks. 19. How many friends have you t u n or spoken to on the telephone in the last 2 weeks? 1 G Nine or more friends. <36) 2 G Five to eight friends. 3 G Two to four frienos. 4 G One friend 5 G No friends. 20. Have you been able to talk about your feelings end problems with et leest one friend during the last 2 weeks? 1 G I can always talk about my innermost feelings. O ' ) 2 G I usually can talk about my feelings. 3 G About half the time I felt able to talk about my feelings. 4 G I usually was not able to talk about my feelings. S G I was never able to talk about my feelings. 8 G Not applicable; I have no friends. 21. How may times in the Ian two weeks have you gone out socially with other people? For example, visited friends, gone to movies, bowling, church, restaurants, inviad friends to your home? 1 G Mare than 3 times. (3D 2 G Three times. 3GTw . ce . 4 G Once. 5 G None. 22. How much o m i heve you spent on hobbies or spire time interests during the I i n 2 weeks? For example, bowling, sawing, gardening, sports, reeding? 1 G I spent most of my scare time on hobbies almost (39) every day. 2 G I scant some snare time on hobbies some of the days. 3 G I S>ent a l inla spare time on hobbies. 4 G I usually did not spend any time on hobbles but did watch TV . 5 Q 1 did not spend any spare tima on hobbies or watching TV. 23. Have you had open arguments with your friends in the last 2 weeks? 1 G I had no arguments and got along very well. <«0) 2 G I usually got along well but had minor arguments. 3 0 I h id mora thin one argument. 4 Q I had many arguments. S G I was constantly in arguments. 8 G Not applicable: I heve no friends. 24. If your feelings were hurt or offended by a friend during the lest two w«eks. how bedly did you take it? 1 G It did not affect mi or it did not happen. (<l; 2 G I got over n in a few hours. 3 0 I got over it in a few days. 4 G I got over it in i week.. 5 G It will take me months to recover. 8 0 Not aoolicaaie: I have no friends. 25. Have you felt shy or uncomfortable widi people in the last 2 weaks? 1 G I always fait comfortable. (<2) 2 0 Sometimes I felt uncomfortable but could relax after a while. 3 0 About half the time I felt uncomfortable. 4 0 I usually felt uncomfortable. SG I always felt uncomfortable. 8 G Not applicable; I was never with people. 26. Have you felt lonely and wished for mon) friends during th* lest 2 waaks? 1 G I have not felt lonely. <*3> 2 G I have felt lonely a few times. 3 C About half the time I felt lonely. 4 G I usually felt lonely. 5 G I always felt lonely and wished for more friends. 27. Have you felt bored in your spent time during the test 2 weeks? 1 Q I never felt bored. (*•») 2G I usually did not fael bored. 3G About half the time I fait borea. 4 D Most of the time I felt bored. 5 G I was constantly bored. Are you t Single. Sepenttd. or Divorced Person not living with s person of opposite sex; piitse answer below: 1 O Y E S . Answer questions 28 & 29. i 4 i i lO NO, go to question 30. 21. How meny timet heve you b«en with a dace these last 2 weeks? 1 Q More than 3 times. l 4 6 > 2 G Three times. 3 G Tw.ce. 4 G One*. SG Never. T I K I • »/7e 117 S t u d y P i o . n l N v u n t x l Ptdrat t n i U i i l 21 SAS-SR-Patient P»g«4 of 6 1 I Depression R t m r c h Unit SOCIAL ADJUSTMENT S E L F R E P O R T QUESTIONNAIRE (Page 4 of 61 29. Heve you been interested in dating during the I est 2 weeks. If you heve not dead, would you heve liked to? 1 O I was always interested in dating. 2 D Most of the time I was interested. 3 O About half of me time I was interested. 4 0 Most of the time I was not interested. 5 0 I was completely uninterested. FAMILY Answer Questions 30-37 about your parents, brothers, sisters, in laws, and children not living et home. Heve you been in contact with any of them in the last two weeks? 1 O YES. Answer questions 20-37. 2G NO, Go to question 36 30. Have you had open arguments with your relatives in tha lest 2 weeks? 1 O We always got along very well. <««> 2 O We usually got along very well but had some minor arguments. 3 O I had more than one argument with at least one relative. 4 0 I had many arguments. S O I was constantly in arguments. 31. Have you been able to talk about your feelings and problems with et least one of your relatives in the last 2 weeks? 1 O I can always talk about my feelings with at least one relative. <<9> 2 0 I usually can talk about my feelings. 3 G About half the time I felt able to talk about my feelings. 4 O I usually was not able to talk about my feelings. 5 0 I was never able to talk about my feelings. 32. Heve you avoided contacts with your relatives these lest two waeks? 1 O I have contacted relatives regularly. ( jot 2 G I heve contacted a relative it laast once. 3 O I have waited for my relatives to contact me. 4 G I avoided my relatives, but they contacted me. 5 G I have no contacts with any relatives. 33. Did you depend on your relatives for help, advice, money or friendship during the lest 2 weeks? 1 O I never need to dapend on them. ( i n 2G I usually did not need to deoend on them. 3 G About half tha time I needed to depend on them. 4 O Most of the time I depend on them. 5 O I depend completely on them. 34. Heve you wantad to do the apposite of whet your relatives wan ad in order to make them engry during the lest 2 weeks? 1 O I never wented to oppose them. (j2i 2 0 Once or twica 1 wanted to oopose them. 3 0 About half the time I wanted to oppose them. 4 0 Most of the time I wanted to oopose mem. ' 5 0 I always opposes them. I i 35. Heve you been worried about things happaning to your relatives without good raeson in the lest 2 weeks? 1 O I have not worried without reason <S3> 2 0 Onca or twice I worried. 3 0 About half the time I worried. 4 0 Most of the time I worried. 5 G I have worried ma tntira timi. 8 O Not applicable; my relatives are no longer living. EVERYONE'answer Questions 36 end 37. even if your relatives art not living. 36. During the lest two weeks, heve you been thinking that you here let eny of your relatives down or heve been onfai/ to them at any time? 1 O I did not feel that I let them down at ill <S4> I 2 0 I usually did not feel that I let them down. | 3 0 About half the time I felt that I let them down. I 4 0 Most of tha time I have felt that I let them down. I 5 G I always felt that I let them down. j 37. During the last two weeks, heve you been thinking thet • eny of your relieves heve let you down or have been j unfair to you at any time? j I O I never fait that they let me down. ( S S ) | 2 G I felt that they usually did not let me down. ' 3 D About half the time I felt they let me down. j 4 0 I usually have felt that they let ma down j 5 G I am very bitter that they let me flown. | Are you living with your spouse or here been living witn a j person of the opposite sex in a permanent reiationsni; ' 1 Q YES, Please answer questions 38-46. (S6> j 2 0 NO. Go to question 47. j 38. Heve you had open arguments with your pirtmif m ttic lest 2 weeks? j 1 0 We had no arguments arid we got along weii. <s?i j 2 0 We usually got along well but haa minor arjuments. j 3 G We had more than one argument. 1 4 0 Wl had many arguments. S O We were constantly in arguments. L > » riaae » / r a 118 Stud? 21 SAS-SR-Patient Page 5 of 6 Oppression Reeeerch U n i t S O C I A L A D J U S T M E N T S E L F R E P O R T Q U E S T I O N N A I R E (Page 5 of 6) 39. Heve you been ab4a to talk ibout your feelings and problems with your partner during the last 2 weeks? 1 G I could always talk freely about my feelings. 2 G I usually could talk about my feelings. 3 G About half the time I felt able to talk about my feelings. 4 G I usually was not able to talk about my feelings. 5 Q I was never able to talk about my feelings. 40. Have you been demanding to heve your own way at home during the last 2 weeks? 1 Q I have not insisted on always having my own way. <5B> 2 G I usually have not insisted on having my own way. 3 0 About half the time I insisted on having my own way. 4 G I usually insisted on having my own way. 5 O I always insisted on having my own way. 41. Have you been bossed around by your partner these last 2 weeks? ' 1 D Almost never. <*°> 2 O Once in a while. 3 O About half the time. 4 0 Most of the time. 5 O Always. 42. How mud) heve you felt dependent on your pertner these lest 2 weeks? 1 O I was independent. <*"*> 2 O I wes usually independent. 3 G I was somewhat dependent. 4 0 I was usually dependent. 5 0 I depended on my partner for everything. 43. How heve you felt about your partner during the lest 2 weeks? 1 G I always felt affection. < ' 2 , 2G I usually felt affection. 3 G About half the rime I felt disiiki and half the time affection. 4 0 I usually felt dislike. 5 G I always felt disnke. 44. How many times have you and your pertner had intercourse? (63) 1 G More than twice a week. 2 • Once or twice a week. 3 0 Onca every two weeks. 4 0 Less than onca every two weeks but at least on;e in the last month. 5 C Not at »ll in a month or longer. 45. Heve you had any probiams during intercourse, such is pain these lest two weeks? 1 C None. i S < i 2 D Once or twice. 3 G About half tha time. 4 0 Most of the time. 5 O Always. 8 O Not applicable; no intercourse in the last two weens. 46. How heve you felt about intercourse during the lest ' 2 weeks? 1 O I always enjoyed it. <sl> 2G I usually enjoyed it. 3 O About half the time I did and half the time I aid no: enjoy it. 4 O I usually did not enioy i t 5 D I never enjoyed it. QUESTIONS 47 54 On Meet Page. L P D T I M I • 119 S t u d y i P » u « n i N u m b e r P » U « n l I m O i i i 21 SAS-SR-Patient Page 6 of 6 | I 1 Depression Re*aarch Unit ! SOCIAL A D J U S T M E N T SELF REPORT QUESTIONNAIRE (Pag* 6 of 61 CHILDREN Hive you had unmarried children, stepchildren, or foster children living it home during the list two weeks? 1 • YES. Answer questions 47-50. (66) 2 G NO. Go to quesiion 51. 47. Have you been interested in what your children are doing -school, play or hobbies during the last 2 weeks? 1 G I was always interested and actively involved. (&t) 2 G I usually was interested and involved. 3 G About half the time Interested and half the time not interested. 4 G I usually was disinterested. 5 G I wasl always disinterested. 48. Have you been able to Calk and l imn to your children during the last 2 weeks? Include only children over the age of 2. 1 G I always was able to communicate with them. (68) 2G I usually was able to communicate with tham. 3 0 About half the time I could communicate. 4 G I usually was not able to communicate. 5 G I was completely unable to communicate. 8 G Not applicable; no children over the age of 2. 49. How have you bean getting along with die children during the last 2 weeks? 1 G I had no arguments and got along very well. (69) 2 G I usually got along well but had minor arguments. 3 G I hed more than one argument. *G I had many arguments. 5 G I was constantly in arguments. 50. How heve you felt toward your children these lest 2 weeks? 1 G I always felt affection. CO) 2G I mostly felt affection. 3 G About half the time I felt aHection. 4 G Most of the time I did not feel affection. 5 G I never felt aHection toward them. FAMILY UNIT Have you ever been married, ever lived with i person of the opposite sax. or ever had children? Please check 1 G YES, Please answer questions 51-53. ' " i i 20 NO, Go to question 54. 51. Heve you worried about your oarmer or any of your i children without any reason dunng cht last 2 weeks, even if you are not Irving together now? 1 Q I never worried. ( " 2 > 2 Q Once or twice I worried. 30 About half the time I worried. 4 0 Most of the time I worriee. 5 G I always worried. 8 G Not applicable; partner and children not living. 52. Ounng the last 2 waaku have you been thinking that you heve let down your partner or any of your children et any tima? 1 Q I did not feel I let them down at all.' ("3) 20 I usually did not feel that I let mem down. 3 Q About helf the time I felt I let them down. j 4 G Most-of the time I have fait that I let them down. j 5 Q I let them down completely. j 53. Ouring the last 2 waeks, have you been thinking that your partner or any of your children have let you down at any time? 1 Q I never felt that they let me down. <'*• 2Q I felt they usually did not let me down. . ! 3 0 About half the time I felt they let me down-. j 4 G I usually felt they let me down. ! 5G I feel bitter that they have lat me down. FINANCIAL - EVERYONE PLEASE ANSWER QUESTION SS. i 54. Have you had enough money to take care of your own and your family's financial needs during die last 2 weens7 1 Q I had enought money for needs. l T S > ; 2G I usually had enough money w i t n minor problems. 3Q About half the time I did not have enougn monev | but did not have to borrow money. j 4 Q I usually old not have enougn money and had to borrow from others. | S O I had great financial difficulty m V I S I T (7S-80) F O R M C A R D Appendix F: BMT Symptom Distress Inventory 121 BONE MARROW TRANSPLANT SYMPTOM DISTRESS INVENTORY Deborah S. Gue, R.N., B.N. NOT TO BE REPRODUCED WITHOUT PERMISSION OF THE AUTHOR COPYRIGHT © 1991 UNIVERSITY OF BRITISH COLUMBIA SCHOOL OF NURSING ID PLEASE ANSWER THESE TWO QUESTIONS BY DRAWING A CIRCLE AROUND A NUMBER PROM 1 TO 5 Questionnaire No 21 (4-5) Over the p a s t month, how o f t en have you had t h i s symptom? (1-3) ID (1-3) 122 Questionnaire No 22 (4-5) How u p s e t t i n g i s t h i s symptom t o you? S k i n Symptoms Skin rashes Itchy skin Tight f e e l i n g skin Sore or burning skin Mottled or discoloured skin Dry or rough skin Skin sores or u l c e r s Hard or thickened skin Shingles Pain from shingles Excessive sweating J o i n t And M u s c l e Symptoms J o i n t pain S t i f f j o i n t s Weakness or loss of strength Muscle pain Shakey hands 1 2 3 4 5 Never R a r e l y Sometimes Of ten Always 1 = Not a t a l l 2 = A l i t t l e 3 = M o d e r a t e l y 4 = Q u i t e a b i t 5 = E x t r e m e l y (6) 1 2 3 4 5 1 2 3 4 5 (6) (7) 1 2 3 4 5 1 2 3 4 5 (7) (8) 1 2 3 4 5 1 2 3 4 5 (8) (9) 1 2 3 4 5 1 2 3 4 5 (9) (10) 1 2 3 4 5 1 2 3 4 5 (10) ( I D 1 2 3 4 5 1 2 3 4 5 (11) (12) 1 2 3 4 5 1 2 3 4 5 (12) (13) 1 2 3 4 5 1 2 3 4 5 (13) (14) 1 2 3 4 5 1 2 3 4 5 (14) (15) 1 2 3 4 5 1 2 3 4 5 (15) (16) 1 2 3 4 5 1 2 3 4 5 (16) (17) 1 2 3 4 5 1 2 3 4 5 (17) (18) 1 2 3 4 5 1 2 3 4 5 (18) (19) 1 2 3 4 5 1 2 3 4 5 (19) (20) 1 2 3 4 5 1 2 3 4 5 (20) (21) 1 2 3 4 5 1 2 3 4 5 (21) 123 PLEASE ANSWER THESE TWO QUESTIONS BY DRAWING A CIRCLE AROUND A NUMBER FROM 1 TO 5 Over the past month, how o f t e n have you had t h i s symptom? How u p s e t t i n g i s t h i s symptom to you? Eye Symptoms Dry eyes Burning or p a i n f u l eyes G r i t t y f e e l i n g eyes L i g h t - s e n s i t i v e eyes Mouth Symptoms Dry mouth Mouth sores Mouth pain or burning Tooth decay Pain or burning when swallowing 1 = Never l = Not a t a l l 2 — R a r e l y 2 — A l i t t l e 3 — Sometimes 3 — Moderately 4 — Often 4 — Q u i t e a b i t 5 = Always 5 Extremely (22) 1 2 3 4 5 1 2 3 4 5 (22) (23) 1 2 3 4 5 1 2 3 4 5 (23) (24) 1 2 3 4 5 1 2 3 4 5 (24) (25) 1 2 3 4 5 1 2 3 4 5 (25) (26) 1 2 3 4 5 1 2 3 4 5 (26) (27) 1 2 3 4 5 1 2 3 4 5 (27) (28) 1 2 3 4 5 1 2 3 4 5 (28) (29) 1 2 3 4 5 1 2 3 4 5 (29) a l Symptoms (30) 1 2 3 4 5 1 2 3 4 5 (30) Weight loss (31) 1 2 3 4 5 1 2 3 4 5 (31) Weight gain (32) 1 2 3 4 5 1 2 3 4 5 (32) Loss of appetite (33) 1 2 3 4 5 1 2 3 4 5 (33) Food tastes d i f f e r e n t (34) 1 2 3 4 5 1 2 3 4 5 (34) Do not enjoy eating (35) 1 2 3 4 5 1 2 3 4 5 (35) Nausea (36) 1 2 3 4 5 1 2 3 4 5 (36) Vomiting (37) 1 2 3 4 5 1 2 3 4 5 (37) Diarrhea (38) 1 2 3 4 5 1 2 3 4 5 (38) PLEASE ANSWER THESE TWO QUESTIONS BY DRAWING A CIRCLE AROUND A NUMBER FROM 1 TO 5 S e x u a l i t y Symptoms Over the p a s t month/ how o f t e n have you had t h i s symptom? How u p s e t t i n g i s t h i s symptom t o you? 124 1 = Never 1 = Not a t a l l 2 — R a r e l y 2 A l i t t l e 3 — Sometimes 3 Moderately 4 — Often 4 — Q u i t e a b i t 5 = Always 5 — Extremely Decreased sexual desire (men and women) (39) 1 2 3 4 5 1 2 3 4 5 (39) D i f f i c u l t y having sexual intercourse (women only) (40) 1 2 3 4 5 1 2 3 4 5 (40) Impotence (men only) (41) 1 2 3 4 5 1 2 3 4 5 (41) Other Problems Coughing (42) . 1 2 3 4 5 1 2 3 4 5 (42) Fatigue (43) 1 2 3 4 5 1 2 3 4 5 (43) Not sleeping well (44) 1 2 3 4 5 1 2 3 4 5 (44) Decreased mental concentration (45) 1 2 3 4 5 1 2 3 4 5 (45) Decreased memory (46) 1 2 3 4 5 1 2 3 4 5 (46) Mental confusion (47) 1 2 3 4 5 1 2 3 4 5 (47) Mood swings (48) 1 2 3 4 5 1 2 3 4 5 (48) Treatment r e l a t e d h a i r loss (49) 1 2 3 4 5 1 2 3 4 5 (49) Treatment r e l a t e d n a i l (50) 1 2 3 4 5 1 2 3 4 5 (50) loss O f f i c e use only: Please return to column two to enter data for questionnaire number 22 Appendix G: Demographic Information, I l l n e s s and Treatment History Data C o l l e c t i o n Guide 126 ID (1-3) Questionnaire No 1 (4) DEMOGRAPHIC INFORMATION, ILLNESS AND TREATMENT HISTORY DATA COLLECTION GUIDE 1. What i s your present age i n years? years (5-6) 2. Gender (please c i r c l e appropriate number) 1 Female 2 Male (7) 3. What i s your marital status? (please c i r c l e appropriate number) 1 Married/cohabiting 2 Single 3 Divorced 4 Separated 5 Widowed (8) 4. How many ch i l d r e n do you have? (9-10) 5. What i s your occupation? 6. What i s the highest l e v e l of education that you have completed? (please c i r c l e appropriate number) 1 Elementary school 2 Grade 7-9 3 Grade 10-12 4 Community College 5 University (11) 7. What was your o r i g i n a l diagnosis that you received the bone marrow transplant for? (please c i r c l e appropriate number) 1 acute myelogenous leukemia (AML) 2 acute lymphoblastic leukemia (ALL) 3 chronic myelogenous leukemia (CML) 4 a p l a s t i c anemia 5 multiple myeloma 6 other, please specify (12) 8. When were you f i r s t diagnosed? month (13-14) year (15-16) 127 9. What type of bone marrow transplant did you have? (please c i r c l e appropriate number) 1 autologous BMT (own bone marrow used) 2 allogeneic BMT (donor bone marrow used) 3 syngeneic BMT (id e n t i c a l twin was your donor) (17) 10. What category best describes your BMT? (please c i r c l e appropriate number) 1 my donor i s related to me 2 my donor i s not related to me 3 my own bone marrow was used (18) 11. When did you have your bone marrow transplant? month (19-20) year (21-22) 12. Where did you have your bone marrow transplant? (please c i r c l e appropriate number) 1 Vancouver General Hospital 2 Cancer Control Agency Of B r i t i s h Columbia (23) 13. Did you have t o t a l body ir r a d i a t i o n ? (please c i r c l e appropriate number) 1 yes 2 no (24) 14. How long were you i n the hospital for your bone marrow transplant? months (25-26) 15. Have you been re-admitted to the ho s p i t a l since your bone marrow transplant? (please c i r c l e appropriate number) 1 yes 2 no (27) 16. What medications are you currently taking? (please c i r c l e appropriate number) 1 cyclosporin 2 prednisone 3 thalidomide 4 others, please specify (28) Appendix H: Participant Information Letter T H E U N I V E R S I T Y O F B R I T I S H C O L U M B I A 129 The School of Nursing T. 206-2211 Wesbrook Mall Vancouver, B.C. Canada V6T 2B5 Symptoms, Functioning, Well-Being, And General Health Perceptions Of Bone Marrow Transplant Recipients Dear P o t e n t i a l Participant; My name i s Debbie Gue, and I am a registered nurse i n the Master of Science i n Nursing program at the University of B r i t i s h Columbia. I am conducting a research study for my t h e s i s that w i l l explore the occurrence of bone marrow transplant-related symptoms as well as various aspects of everyday functioning following bone marrow transplantation. People l i k e yourself, who have had a bone marrow transplant can provide the valuable information that i s needed to complete t h i s study. Therefore, I am i n v i t i n g you to p a r t i c i p a t e . P a r t i c i p a t i o n i n the study consists of the completion of the enclosed questionnaires, and returning the completed questionnaires i n the enclosed postage-paid envelope. The questionnaires are designed to c o l l e c t information on symptoms, mood states, functioning i n usual roles and a c t i v i t i e s , general health perceptions, and demographic and treatment history information. Completion of the questionnaires w i l l take approximately 60 minutes. Once you s t a r t the questionnaires, i t i s important for you to t r y and complete them within 24 hours. I encourage you to take a break i f you wish during the hour i t w i l l take to complete the questionnaires. I would appreciate receiving the completed  questionnaires p r i o r to the new year, however please send them when you are able. Completion and return of the questionnaires w i l l imply that you have given your consent to p a r t i c i p a t e i n the study. The purpose of t h i s study i s to c o l l e c t information that w i l l allow health care professionals to better understand the challenges and issues encountered by individuals who have had a bone marrow transplant as they s t r i v e to recover from i l l n e s s and treatment. The study w i l l occur i n two phases i n order to examine how challenges and issues encountered by individuals who have had a bone marrow transplant may change over time. Those who choose to 12 November, 1990 Appendix I: Participant Reminder Letter Appendix J : Letters of Permission for the use of the P r o f i l e Of Mood States, the Sickness Impact P r o f i l e , and the Social Adjustment Scale - S e l f Report 

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