- Email: [email protected]
Quality of life following transplantation of the heart, liver, and lungs
ELSEVIER
Quality of Life Following Transplantation Heart, Liver, and Lungs
of the
Christine Littlefield, Ph.D., Susan Abbe , M.D., Denise Fiducia, Ph.D., Carl Cardella, M.D., Paul Greig, M.D., e ary Levy, M.D., Janet Maurer, M.D., and Timothy Winton, M.D. Abstract: The purpose of this sfudy was to describe the quality of life of patients who have received a transplant of the heart, liver, and lungs. We wished to document how the different patient groups fared in relation to each other with respect to physical, psychological, and social functioning, as well as in relation to published normative data. We also wished to identify factors that contribute to better functioning. We sent out a questionnaire by mail and received responses from 55 heart, 149 liver, and 59 lung transplant recipients (82% response rate). Measures included the SF-36, Mental Health Inventory, the State Anxiety Inventory, the UCLA Loneliness ScaleRevised, a quality of life measure that rated degree of improvement since transplantation, a measure of degree of difficulty in following medical and lifestyle regimens, sleep disturbance, and the Illness Intrusiveness Rating Scale. Results indicated that lung transplant patients reported better functioning than heart or liver transplant patients in all three domains of physical, psychological, and social functioning. Lung patienfs’ level of functioning was equivalent to or better than published norms for the SF-36. Heart and liver recipients reported equivalent functioning to published norms in some domains, but reported impairment in the areas of physical and social functioning. Heart patients especially reported greater intrusiveness of their illness on their daily lives and indicated more difficulty complying with their lifestyle regimen. In all three groups, a large majority of patients reported feeling that life had improved since transplant with respect to health, energy level, activity level, and overall qualify of life. Fewer patients reported improvements in the areas of sex life, marriage, family relationships, and social relationships. Where there were differences Departments of Psychology (C.L., D.F.), Psychiatry (C.L., S.A.), Medical Psychiatry (S.A.), Medicine (CC., G.L., J.M.), Division of Nephrology (C.C.), and Surgery (l?G., T.W.), The Toronto Hospital, University of Toronto, Toronto, Ontario, Canada; the Multi Orean Transulant Program (G.L.), and Transplant Program (J.M.), Cleveland Clinic,Cleveland, OH. _ Address reprint requests to: Dr. Susan Abbey, Department of Psychiatry, The Toronto Hospital, EN%212, 200 Elizabeth Street, Toronto, Ontario M5G 2C4, Canada.
36s ISSN 0163-8343/96/$15.00 I’11 SOl63-8343(96)00082-5
among the three patient groups, again if was the lung patients who reported more improvement in life since transplantation. Patients with better physical functioning tended to have more energy and pep, to be younger, to see themselves as being in better health, to feel less intrusion on their lives of their illness, and to be employed. Those with better psychological functioning fended to report less sleep disturbance, less loneliness, better social functioning, more vitality, and to be older. Better social functioning was associated with better mental health, less illness intrusiveness, and less role impairment as a result of physical or emotional factors. Relatively few patienfsroughly a quarter of the total sample-reported that they were working either full or part time. We conclude that fransplanfation results in improved quality of life overall, but that problems persist for some patients in their physical and social functioning. Interventions aimed at improving rehabilitation in specific targeted areas may enable patients to resume a more fulfilling lifestyle posttransplant. 0 1996 Elsevier Science Inc.
Introduction Vital organ transplantation is a dramatic intervention that has the potential to prolong the lives of individuals at the end stage of a number of heart, liver, and lung diseases. It is an intervention of last resort. When successful, the life-saving benefits of transplantation are obvious. However, there is growing recognition within the field that survival is not the only yardstick by which to measure treatment effectiveness. Improved quality of life is necessary in order to justify the personal and societal costs associated with this most invasive of surgical procedures 111. A few studies to date have examined quality of life following heart and liver transplantation but very little literature exists on the quality of life of patients following lung transplan-
General Hospital Psychiatry 18, 36S475, 1996 0 1996 Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
Quality of Life and Transplantation
tation. The commonly accepted parameters of quality of life include physical, psychological, and social functioning.
based on whether they were working pretransplant and/or had sufficient health insurance to cover the costs of transplantation.
Physical Functioning
Psychological
Physical functioning typically refers to the physical capability of patients to perform their normal daily activities (e.g., mobility, exercise, work, recreation). It can also refer to the presence of physical symptoms and to the frequency of medical interventions (e.g., number of days in the hospital). All studies that have examined the physical functioning of patients who have survived heart and liver transplantation have reported improvements when physical capabilities and medical interventions are examined [24]. However, there is some suggestion that functional capacity decreases with time since transplant [5]. Ability to return to work, a factor that many medical practitioners use to determine successful rehabilitation, differs widely from center to center, averaging about 50% [4,6-101. Bonsel et al. [ll] compared transplanted liver patients at 3 months, 1 year, 2-5 years, and 6-10 years posttransplant and reported that although the number of hours spent in “working activity” (including paid and unpaid work) increased with time since transplant, patients failed to put in an average B-hour working day at any time period. Physical symptoms experienced by patients following transplantation can adversely affect quality of life. Potential side effects associated with the continued use of immunosuppressants include nephrotoxicity, increased susceptibility to lymphoma, tremors, hypertension, gum enlargement, infections, changes in facial shape, hair growth, fever, pins and needles in extremities, among other complaints 112,131. In a number of studies physical symptoms, particularly generalized weakness and fatigue, have been reported to be problematic for a significant proportion of transplant patients [1,12,141. For men, impotence has been reported to be an especially distressing symptom [15,16]. In at least one study, physical symptomatology has been reported to increase with time since transplant [5]. On balance, then, although many patients report improved physical functioning posttransplant, significant problems remain. Patients complain of physical symptoms that, while they are not life threatening, can impact adversely upon quality of life. Moreover, there is wide variability in the reported rates of return to work. This may reflect bias in the selection of patients for transplantation,
Psychological functioning usually refers to the presence of psychological distress (e.g., symptoms of anxiety, depression) or conversely, the level of wellbeing or positive affect reported by patients. Severe distress is common among those awaiting transplantation. Mai et al. 1161 reported that 52% of 27 heart transplant patients had a psychiatric diagnosis, most commonly involving anxiety and depression, prior to transplantation. Craven 1171 reported that 50% of 116 patients who presented for assessment for lung transplantation reported a current or past psychiatric history, and of 57 patients on the lung transplant waiting list, 21% developed a psychiatric disorder while waiting, most frequently involving anxiety. Trepacz et al. 1181 reported that 49% of 247 liver transplant candidates had a psychiatric diagnosis, most often involving delirium or an adjustment disorder. Depressive symptomatology has been found to decrease among heart, liver, and lung recipients after transplantation [16,19,20], although there is a paucity of carefully conducted prospective research tracking the same patients over time. Following liver transplantation, severe preoperative hepatic encephalopathy has been found largely to resolve 121,221, although even in patients with subclinical pretransplant hepatic encephalopathy, there is some residual cognitive impairment following liver transplantation 1231. There is the suggestion that a significant minority of patients experience notable ongoing distress following transplantation. For example, one-third of a sample of heart recipients continued to have high distress levels at all follow-up assessments in the first year posttransplant 1241. In another study, longer-term liver transplant recipients (>2 years) had higher depression and anxiety scores than shorter-term patients (~2 years) 151. Continued psychological distress may be related to ongoing medical problems, or the threat of such problems occurring in the future 1251. Symptomatology associated with immunosuppressant medication is more likely to occur with time and is a major source of distress for many patients 1261. In summary, psychological distress and psychiatric disorders are quite common in persons awaiting transplantation. The few studies that have followed patients through the transplant experience suggest
Functioning
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C. Littlefield et al.
that these problems resolve somewhat postoperatively. However, the prevalence and course of psychiatric disorders and the variability of psychological distress over time has yet to be documented comprehensively The potential importance of such research is demonstrated by Caine et al. 121, who reported that better pretransplant functioning in the areas of mobility, energy level, quality of sleep, and emotional reactions predicted a shorter length of stay in the hospital following heart transplantation. These factors also predicted return to work and the resumption of activities and hobbies at 3 months posttransplant. Though these findings are likely explained in part by severity of illness and debilitation pretransplant, psychological state and expectations about recovery and rehabilitation may have contributed as well. Indeed, in another study of heart transplant recipients 1271, positive expectations pretransplant predicted good mood, adjustment, and quality of life 6 months posttransplant, even in patients who experienced complications. It has always been a truism to say that a positive attitude contributes to patients’ recovery. Research in support of this belief ought to provide the impetus for psychological interventions aimed at helping transplant patients form and maintain positive attitudes and expectations about their own recovery
Social Functioning Social functioning can refer to the amount of time spent in social interactions, the degree to which social roles are fulfilled, or the degree to which illness interferes with social functioning. We expect social functioning to improve after transplantation, and to some extent it does, although there is surprisingly little research on this aspect of quality of life following transplantation. In one study 141, liver transplant recipients and their family members both reported improved social performance and less burden on the family compared with patients’ pretransplant functioning. Patients’ own reports indicated that they were more able to participate in normal recreational activities and pastimes after transplant. However, these patients were still impaired in their social functioning compared with a normal control group. With regard to family roles, Heyink et al. 1281 reported that a third of their liver recipients, interviewed an average of 3% years after transplantation, continued to find it difficult to establish a new role or function within the family. Many of these patients found that other fam-
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ily members resisted their attempts to resume a healthy family role. Although these findings are suggestive, comprehensive research documenting social functioning among transplant recipients is sparse indeed. Questions remain about the effect of transplantation on marital or family relationships over time, as well as about patients’ ability to resume their former social and recreational lives posttransplant. Anecdotally, one factor that patients often mention as a barrier to social functioning is their concern about getting infected through exposure to others, especially in the winter. To conclude, most of the quality of life studies in the transplant literature to date have reported on fairly small numbers of patients and have limited their assessment to only some of the relevant domains of quality of life rather than taking a comprehensive approach. Most studies fail to anchor the functioning of transplant patients within the context of normal functioning. Only one study has compared the quality of life of patients receiving different organ transplants 1201. Often, studies have restricted their focus to the first year posttransplantation. Most studies have demonstrated some improvement in quality of life among transplant survivors, but there is some indication that for a nontrivial minority of patients, life after transplant is accompanied by significant impairment and distress. The newness of this field is reflected in the fact that variables that might predict adjustment and quality of life following transplantation remain largely unexplored.
Study Objectives There were three major objectives of this study. First, the study was designed to generate descriptive data about the quality of life of a Canadian sample of heart, liver, and lung transplant recipients. In particular, we were interested in documenting the level of physical, psychological, and social functioning experienced by patients following transplantation. We were interested in how the heart, liver, and lung patients fared in relation to each other, as well as in relation to published norms for other patient groups, and the general nontransplanted population. Secondly, we wanted to investigate the interrelationships among the various quality of life indices. We wished to identify both factors that are associated with better functioning and specific indicators of poor functioning. Thirdly, the study was designed to test the usefulness of
Quality of Life and Transplantation
published psychometric instruments in this population. Standardized quality of life instruments have had only limited use in the transplant population and we wished to begin to generate some normative data.
Method Sample The sample was drawn from the Multi Organ Transplant Program of The Toronto Hospital in Toronto, Canada. The sample consisted of all patients awaiting or surviving transplantation of the heart, liver, and lungs as of May 30, 1993. Patients were excluded from the study because of inability to read and write English or marked medical morbidity (i.e., prolonged hospitalization with significant weakness or neurological impairment which precluded ability to complete the study). These exclusion criteria eliminated less than 10% of the total sample. Questionnaires were sent to 363 patients.
Procedure The study was a cross-sectional mail survey, Reminders and a second copy of the survey were sent to nonresponders 1 month following the initial mailing. The study was approved by the Human Subjects Review Committee of the University of Toronto and The Toronto Hospital. Respondents were asked to return a signed copy of the consent form with their questionnaires.
Instruments The questionnaire package consisted of an introductory letter outlining the purpose of the study, an information sheet with answers to commonly asked questions about the study, consent forms, and the questionnaire. The questionnaire incorporated a series of instruments assessing various aspects of physical, psychological, and social functioning. In addition, basic demographic information was obtained. The questionnaire included the following scales. Medical Outcome Study 36-Item Short-Form Health Survey (SF 36) 1291. This 36-item survey was developed for use in quality of life and medical outcome studies. It has been used widely in a range of different medical conditions and has been demonstrated to have adequate reliability and validity.
Normative data are available for the general population and for patients with congestive heart failure and respiratory failure, illnesses that are antecedent conditions for the heart and lung transplant patients. The SF-36 is made up of nine subscales: physical functioning, role physical, bodily pain, general health perception, vitality, social functioning, role emotional, mental health, and change in health. Mental Health Inventory (MHI) 1301. This selfadministered questionnaire was developed parallel to the SF-36 described above. It has demonstrated reliability and validity 130,311. For the purposes of this study, a shortened, 18-item version of the MHI was used 1321, consisting of five subscales: anxiety, depression, loss of behavioral/emotional control, positive affect, and interpersonal ties. State Anxiety Inventory. The state scale of the Spielberger State-Trait Anxiety Inventory 1331 is a 20-item inventory of anxiety which has been widely used in a variety of psychological and medical studies. The state scale is designed to measure feelings that are occurring at the time the questionnaire is being completed, thus may fluctuate, depending on specific situational factors [34]. UCLA Loneliness Scale-Revised [351. This 20item measure assesses the quality of relationships with others. It was used to measure degree of connectedness with other people. It consists of two subscales-loneliness and companionship and a total loneliness score. The scale has demonstrated validity and reliability Quality of Life. Patients were asked to indicate the extent to which their quality of life has altered as a result of transplantation. The instructions read, “To what extent did the following aspects of your life change for the better or worse as a result of going through a transplant?” Patients were asked to rate eight aspects of their lives on a 5-point scale ranging from ‘much better’ to ‘much worse.’ The eight aspects were health, energy level, activity level, sex life, marriage, family relationships, social relationships, and overall quality of life. Difficulties with Adherence. Patients were asked to rate the degree of difficulty they have following their prescribed medical and lifestyle regimens. Ratings were made on a 4-point rating scale ranging from ‘not at all’ to ‘a lot.’ The instructions read, “Do
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C. Littlefield et al. Table 1. Demographic
features of transplant groups
Age ZII Gender-% male Marital status-% married Work status-% working PT or FT Education-% > high school Living arrangements-% living alone
Heart (n = 55)
Liver (n = 149)
Lung (n = 59)
53.19 (9.3) 87.3 80.0 16.4 48.1 7.3
50.03 (11.9) 47.0 81.5 34.0 53.8 8.8
46.93 (11.6) 59.3 69.0 29.3 50.8 13.8
p<
.02” .001”~’ ns .05 ns ns
“Heart # Lung, p < .05. bLiver # Lung, p < .05. ‘Heart # Liver, p < .05. # indicates significant
difference between groups on pair-wise comparison.
you have difficulty following your post-transplant medical regime in any of the following areas?” The eight areas were taking medications regularly, coming in for clinic regularly, undergoing biopsies when necessary, undergoing other invasive procedures, abstaining from smoking, abstaining from alcohol, staying in shape, and keeping weight down.
Sleep Disturbance. This 7-item scale measures the amount of sleep disturbance experienced by patients during the previous 2 weeks. Patients are asked to rate on a 5-point scale ranging from ‘not at all’ to ‘a great deal,’ aspects of their sleep-related behavior, including trouble falling asleep, soundness of sleep, broken sleep, troublesome dreams, difficulty awakening, feeling tired upon awakening, and early morning wakening. This scale was taken from the Toronto General Health Survey 1361 and has been applied to other illness populations (most notably cardiac). Validity and reliability studies are ongoing. Illness Intrusiveness Ratings Scale L371. This 13item scale obtains patients’ perceptions of the degree to which their transplant and the associated posttransplant medical regimen interferes with 13 life domains including work, active recreation, passive recreation, financial situation, relationship with spouse, sex life, family relations, other social relations, self-expression and self-improvement, religious expression, and community and civic involvement. The instrument has been used in a variety of medical conditions including end-stage renal disease, multiple sclerosis, and rheumatoid
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arthritis 1381 but has not yet been used with transplant patients. A full description of the results using this measure are reported elsewhere [391.
Sexual Difficulties. Men were asked, “Since you have been ill and especially in the past 2 weeks, have you had any problems with impotence?” Ratings were made on a 4-point scale ranging from ‘not at all’ to ‘all of the time.’ Data Analysis The data were tabulated and descriptive statistics are reported. A variety of analyses including Chisquares, correlations, one-way analysis of variations (ANOVAs), and regressions were used to describe the patient sample, to contrast the three organ groups with regard to their outcome and to compare patients endorsing good and poor quality of life, to compare patients with regard to selfreported compliance with medical and lifestyle regimens, and to investigate factors that were associated with physical, psychological, and social functioning. In most cases results were considered significant if p < 0.05.
Results Demographic Information A total of 298 patients responded to the survey, representing an 82% response rate overall. Analyses are restricted to the 263 posttransplant respondents. The median time since transplant was 26 months, with a mean of 32 months (SD = 23.2 months, range
Quality of Life and Transplantation
Table 2. Comparison
of heart, liver, and lung recipients
on quality of life measures
Heart SF-36 Physical functioning Role physical Role emotional Social functioning Bodily pain Mental health Vitality General health perception Change in health Mental Health Inventory Anxiety Depression Loss of behav/emot control Positive affect Emotional ties Total score State Anxiety Inventory Loneliness scale Loneliness Companionship Total score Illness Interference Illness intrusiveness Sleep disturbance
Liver
Lung
P
70.71 52.32 72.84 78.86 29.82 78.30 56.60 58.55 3.74
(22.7) (45.9) (41.5) (21.6) (11.1) (15.4) (21.2) (21.0) (1.1)
71.56 58.28 79.54 79.73 30.88 76.86 60.59 65.81 3.88
(25.9) (44.3) (32.9) (22.9) (11.6) (13.4) (23.2) (23.8) (1.3)
79.75 75.43 87.01 86.84 34.07 83.80 70.54 68.73 3.68
(23.6) (38.2) (29.7) (21.3) (10.2) (13.4) (20.4) (22.8) (1.3)
.07” .oP .09b .09
8.02 8.20 7.37 18.07 4.94 88.14 32.77
(3.34) (3.6) (3.5) (3.7) (1.2) (13.7) (10.6)
9.00 8.00 7.14 17.65 4.95 86.94 33.16
(4.31) (3.7) (3.2) (3.8) (1.3) (14.2) (11.9)
7.34 6.54 6.21 18.81 5.20 92.90 28.78
(3.25) (3.3) (2.7) (3.5) (1.0) (12.4) (9.7)
.02”
.O? .003a,b .05b,’ ns
.02”,b .lO ns .02”“” .04”
18.83 (6.6) 32.22 (5.4)
17.97 (5.9) 32.91 (4.6)
17.56 (5.8) 34.81 (4.6)
.O;sb
36.55 (10.1)
35.05 (8.7)
32.76 (9.5)
.09b
40.44 (14.2) 15.36 (5.4)
32.59 (15.1) 15.87 (5.5)
30.63 (14.8) 14.80 (5.31)
.OOlb,’ ns
“Liver f Lung, p < .05. bHeart # Lung, p < .05. ‘Heart # Liver,
p < .05.
# indicates signicant
difference between groups on pair-wise comparison.
= 1-97 months). Of the total sample, there were 55 heart patients, 149 liver patients, and 59 lung patients. These numbers reflect the relative sizes of the different programs within the Multi Organ Transplant Program. Table 1 presents the demographic features of the three transplant groups. As can be noted, the heart group was significantly older than the lung group, with the liver group in between. The heart group had significantly more males than either the liver or lung groups. More liver than heart patients were currently working either full or part time, with lung patients in between. There were no differences among groups in marital status, education level, or likelihood of living alone.
Time Since Transplant We first examined whether responses on any of our variables were influenced by the length of time since transplant. The sample was broken into three groups: patients transplanted less than 1 year ago (n
= 681, 14 years ago (M = 125), and greater than 4 years ago (n = 64). X2 analyses were conducted on the following variables by the time since transplant: type of transplant (i.e., heart, liver, or lung), length of time after transplant until the patient was feeling better, improved overall quality of life, difficulty adhering to the medical regimen, and difficulty adhering to the lifestyle regimen. One-way ANOVAs were conducted comparing the three groups on each of the five Mental Health Inventory subscales, each of the nine SF-36 subscales, the three Loneliness scales, and the sleep disruption scale. Only one analysis (less than would be expected by chance given the number of analyses) reached statistical significance: the Change in Health subscore of the SF-36 (F(2,251) = 44.01, p < .OOOl>. This score is based on a single item that asks respondents to rate the degree of change they have experienced in their health status in the preceding year. In our sample, patients who had been transplanted less than 1 year tended to report that their general health was
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C. Littlefield et al. ‘somewhat’ to ‘much worse’ in the past year, whereas patients who had been transplanted longer tended to report no change over the past year. Because duration of transplant did not seem to influence the variables of interest in this study overall, this variable was not included in further analyses. SF-36
Functional
Status
The SF-36 subscale scores of the three patient groups were compared using ANOVA. The means and SDS for each of the subscales are presented in Table 2. There were significant differences between at least two of the patient groups on most of the subscales. Using the least-significant difference test for pair-wise comparisons, it was found that in all cases, the lung transplant patients reported better functioning than the other organ groups. For comparative purposes, scores on these subscales were also compared with normative data available on the SF-36 1291 using a series of t-tests. Because of the large number of comparisons performed, a significance level of p s .Ol was used for these analyses. Heart transplant patients were compared with a normative sample of 216 patients with congestive heart failure (CHF); lung transplant patients were compared with a normative sample of 85 patients with chronic obstructive pulmonary disease (COPD); and each of the three transplant groups was compared with a sample of 2474 members of the general US population. There was no suitable normative group for comparison with the liver transplant patients. Medical Comparisons. Compared with their respective medical comparison groups, the heart and lung transplant recipients had significantly higher mean scores on physical functioning (t(54) = 7.57, p < .OOOl; t(58) = 7.44, p < .OOOl), role physical (t(53) = 2.87, p < .Ol; t(57) = 8.19, p < .OOOl), general health perception (t(54) = 4.06, p < .OOl; t(58), p < .OOOl), and vitality (t(52) = 4.22, p < .OOOl; t(55) = 9.39, p < .OOOl). This indicates that the transplant patients reported better functioning than the medical normative groups on each of these scales. The lung transplant group had significantly better mean scores on the mental health (t(58) = 9.03, p < .OOOl) and bodily pain (t(58) = 5.71, p < .OOl) subscales than the COPD normative means, whereas there were no differences for the heart transplant patients compared with normative data for patients with CHF on these scales. The heart transplant recipients had higher role emotional scores than the CHF
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comparators (t(54) = 6.11, p < .OOl), whereas there was no significant difference between the lung groups. Neither heart nor lung transplant patients differed from their respective medical comparison group on social functioning. General Population Comparisons. Compared with the general population, the heart transplant patients reported poorer physical functioning (t(54) = 4.39, p < .OOOl), role physical (t(53) = 4.59, p < .OOOl), general health perception (t(54) = 4.72, p < .OOOl), and social functioning (t(54) = 4.06, p < .OOl). The heart transplant patients’ scores were equivalent to the general population norms on bodily pain, vitality, role emotional, and mental health. The lung transplant patients reported better or equivalent scores to the general population norms for every SF-36 subscale. Scores were equivalent to the general population norms for physical functioning, bodily pain, role physical, general health perception, social functioning, and role emotional. The lung transplant group had better scores than the population norms on vitality (t(55) = 3.55, p < .OOl) and mental health (t(58) = 5.20, p < .OOOl). The liver transplant group reported lower scores than the general population norms for physical functioning 0045) = 5.88, p < .OOOl>,role physical (t(141) = 6.10, p < .OOOl), general health perception (t(144) = 3.11, p < .Ol), social functioning (t(148) = 16.90, p < .OOl), and role emotional (t(148) = 12.29, p < .OOl). Their scores were equivalent to the general population norms on bodily pain, vitality, and mental health.
Psychological
Functioning
The heart, liver, and lung groups were compared on the subscales of the Mental Health Inventory (MHI), the State Anxiety Inventory (SAI), and the Loneliness Scale. Results of these analyses are presented in Table 2. Comparisons among individual groups using the least-significant difference test revealed that the liver group reported significantly more anxiety and depression and had a lower total mental health score than the lung group. The heart group also reported higher depression scores than the lung group. Comparing the SAI scores of the three patient groups with norms for the general population, the lung recipients’ mean score fell around the 30th percentile, whereas the heart and liver recipients’ mean scores fell just above the 50th percentile. The lung recipients reported a significantly higher companionship score (indicating a
Quality of Life and Transplantation stronger sense of connectedness to other people) than each of the other two groups.
Illness Interference There was a significant difference among groups on the Illness Intrusiveness Scale (Table 2), with the heart transplant patients experiencing significantly more disruption in lifestyle as a result of their illness and its treatment than either liver or lung transplant patients. With respect to sleep disturbance, there were no differences among groups. Nor were there any differences among groups on the proportion of men reporting problems with impotence. Overall, 49% of men reported that they had no problems with impotence, 22% said they had problems some of the time, 8% had problems most of the time, and 21% had problems all of the time.
Self-Reported
Difficulties
with Adherence
Patients were asked to indicate the extent to which they encountered difficulties following their posttransplant medical regime in eight areas. Four items were grouped under the category of ‘medical regimen’ and four items were grouped under the category of ‘lifestyle regimen.’ Patients were considered to be having difficulty following either of these regimens if they endorsed a 3 or 4 on any single item within it. Comparisons among the heart, liver, and lung groups are presented in Figure 1. There were no differences among the three groups with
respect to medical regimen. Roughly a quarter of all patients reported difficulty with at least one item within the medical regimen category For lifestyle regimen, there were highly significant differences among the three groups, with 82% of the heart patients reporting difficulty with at least one lifestyle item compared with 53% of liver patients and 36% of lung patients. These differences among groups were all significant.
Quality of Life Figure 2 presents the percentage of patients in each transplant group reporting improved quality of life since transplantation on eight items. For all three groups, by far the majority of patients reported improvement in the areas of health, energy level, activity level, and overall quality of life. Fewer patients reported improvement in the areas of sex life, marriage, family relationships, and social relationships. More lung patients than heart or liver patients reported improved energy level, activity level, family relationships, social relationships, and overall quality of life.
Correlates of Physical, Psychological, Social Functioning
and
Three stepwise multiple regression analyses were performed in order to determine which variables correlated best with the three domains of quality of life of interest in this study: physical, psychological, and social functioning. The dependent variables for
100
00
Figure 1. Percentages of heart, liver, and 00 %Ol
n Hearl
PsthlS
a Liver
40
n Lung 20
lung transplant patients reporting difficulty with medical or lifestyle regimens. No significant differences among the three patient groups exist with respect to self-reported difficulties with medical regimens. However, self-reported difficulties with lifestyle regimens are significantly different among each of the three groups (p < .OOOOl).
0 MedIcal
Regimen
Lllwlyle
Regimen
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C. Littlefield et al.
a)
100
w
6a %Of PatiOIlts El LIVW
4a
mung 20
Figure 2 a, b. Percentages of heart, liver, and lung transplant patients reporting improved quality of life (QOL) since transplantation. Significantly more lung
a Health
Energy Level
Activity
Levsl
than heart or liver transplant patients reported improved energy level (p < .02); activity level (p < .0003); family relation-
100
ships (p < .07); social relationships (p < .OOOl);and overall quality of life (p < .0005).
80
60 % of
n fbm
Patlsws 40
q LIVW n Lung
20
0 Family
SOCbl
Relatlonshlps
Relationships
each analysis were, respectively, the physical functioning subscale score from the SF-36, the total score from the MHI, and the social functioning subscale score from the SF-36. Correlations were computed among the variables of interest in the study. Those variables that correlated at least Y = .20 with the dependent measure were included in that regression analysis.
into the analysis were as follows: age estimated 5% of the unique variance (f = 4.87, p < .OOOl), general health perception 4% (f = 2.80, p < .006), illness intrusiveness 1.6% (f = 2.58, p = .Ol), having a liver or lung transplant rather than a heart transplant 1% (f = 2.27, p = .02), and being employed 1% (f = 2.11, p < .04). Together these variables accounted for 49% of the variance in physical functioning.
Physical Functioning. The best predictor of physical functioning was the vitality subscale of the SF-36, accounting for 36% of the unique variance in physical functioning (t = 5.91, p < .OOOl).The unique contribution of each of the other variables allowed
Psychological Functioning. The best predictor of mental health was the absence of a sleep disturbance, accounting for 43% of the unique variance in the MHI total score (f = 6.77, p < .OOOl>.The total loneliness score accounted for 15% of the unique
445
Quality of Life and Transplantation variance (t = 6.52, p < .OOOl), social functioning 6% (t = 4.42, p < .OOOl), vitality 1% (t = 3.02, p < .003), and age 1% (t = 2.97, p < .003). Together these variables accounted for 66% of the variance in psychological functioning. Social Functioning. The best predictor of social functioning was mental health, accounting for 35% of the unique variance (t = 4.20, p < .OOOl>.Illness intrusiveness accounted for a further 14% of the variance (t = 3.73, p = .0003), role emotional 5% (t = 3.40, p = .OOOl),general health perception 2% 0 = 2.48, p = .Ol), and role physical 1% (f= 2.15, p = .03). Together these variables accounted for 57% of the variance in social functioning.
Discussion On measures of functional status, the lung transplant recipients consistently reported better functioning than the liver and heart transplant groups. This tendency covered a range of domains, across many physical, psychological, and social aspects of quality of life. Lung transplant patients scored better than a normative comparison group of patients with COPD across most domains, and on all domains they were performing at least as well as the general population. With respect to mental health and vitality, they did better. Compared with the general population, heart transplant patients demonstrated significant impairment with respect to physical and social functioning. However, they did have better physical functioning scores across several domains than a normative comparison group of patients with congestive heart failure. The liver transplant group also were significantly more impaired than the general population on physical and social functioning. Heart and liver recipients reported problems with work or other daily activities as a result of their physical health, as well as interference with normal social activities with family and friends. In addition, heart patients feel most strongly the intrusiveness of their illness on their daily lives. More heart patients than any others also reported difficulty complying with some aspect of their lifestyle regimen posttransplant. Somewhat surprisingly, given these findings, both the heart and liver recipients’ mental health scores were equivalent to the general population norms, suggesting that although they felt that their health was somewhat compromised, they were coping reasonably well with their situation. The vast majority of patients in all groups re-
ported improvements in the health, energy, and activity domains of quality of life. Fewer patients reported improvements in marital, sexual, and family relationships. This suggests that interpersonal problems require specific interventions. Many personal problems that exist prior to illness are put on hold while the patient is awaiting transplantation, but other problems develop as a result of the disruption in lifestyle associated with the severe illness of a family member. Clearly, transplantation is not a panacea capable of fixing all problems in the lives of persons receiving one. It often comes as a surprise to families that once the life-and-death issues of transplantation are dealt with, day-to-day issues resurface. In our experience, patients and families often underestimate the degree of adjustment that is required to resume a more ‘normal’ life after transplantation. Family roles require readjustment and as family members resume their other activities, the patient is often left at loose ends. A provocative question to emerge from these data is, Why did the lung transplant group report consistently better performance than the heart and liver recipients? One reason may be the striking contrast between respiratory insufficiency pretransplant and normal breathing posttransplant, accounting for a positive “glow” that generalizes to other aspects of life. Other reasons may be more specific to the Toronto Lung Transplant Program itself which includes a psychosocial assessment prior to transplant to identify difficulties early in the process and institute interventions where necessary While waiting, most patients and their support person attend a weekly support group. They must also attend a rehabilitation program three times a week. These patients often socialize and provide mutual support informally in the cafeteria and coffee shop. All of these factors may contribute to improved quality of life posttransplant, from both a physical and emotional perspective. Adherence to strict medical and lifestyle regimens posttransplantation is a strong expectation of each of the medical teams. In our total sample, roughly a quarter of patients reported having difficulty following some aspect of their medical regimen. When it came to following the lifestyle regimen, over 80% of heart patients, more than half of the liver patients, and about a third of lung patients reported some difficulty Given the importance to continued survival of adherence to medical and lifestyle regimens, these numbers are alarming. That so many people reported difficulties suggests
45s
C. Littlefield et al. the need to target and reinforce healthy lifestyle behaviors on an ongoing basis. Finally, we identified sets of variables that correlate best with functioning across the three quality of life domains. Persons who reported being more physically active also tended to have more energy and pep, be younger, see themselves as being in better health, feel less intrusion by their illness on their daily lives, and to be employed. Persons who functioned better psychologically tended to sleep better, be less lonely, have better social functioning, have more vitality, and to be older. With respect to social functioning, when patients perceive that illness intrudes on their lives and that their general health is poor, they are less able to maintain their social relationships. Relatively few patients reported that they were working-roughly a quarter of our sample overall. In another study 191, three factors found to negatively influence whether heart transplant recipients worked posttransplant were their length of medical disability pretransplant, a self-perception of being unable to work, and the potential loss of health insurance or disability income. These factors may have influenced our results as well. Anecdotally, many patients tell us that given their uncertain future, they prefer not to spend their remaining years working, particularly if that work was not very rewarding. They are also reluctant to give up disability benefits for fear that they may become ill in the future. The conclusions we can draw here are, of course, limited by the cross-sectional design of this preliminary study. A systemic program of prospective research is necessary to identify with confidence factors that influence quality of life posttransplant. Further research is needed into social and family problems, as well as into the sexual functioning and sleep patterns of patients posttransplant. Such research is also needed to render information on the design of interventions to enhance adjustment posttransplant. Among transplant recipients such interventions could be aimed at improving rehabilitation and enabling patients to participate more fully in a personally
meaningful
3.
4.
5. 6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
lifestyle.
The authors wish to thank the Department of Psychiatry Research Fund for its generous support of this project. We also thank Terry Knack for generously volunteering her time for data entry.
References 1. O’Brien BJ, Buxton MJ, Ferguson BA: Measuring the effectiveness of heart transplant programmes: quality
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2.
17. 18.
19.
of life data and their relationship to survival analysis. J Chron Dis 4O(Suppl 1):137S-1535,1987 Caine N, Sharples LD, English TAH, Wallwork J: Prospective study comparing quality of life before and after heart transplantation. Transplant Proc 22:14371439, 1990 Gaudiani VA, Stinson EB, Alderman E, et al: Longterm survival and function after cardiac transplantation. Ann Surg 194:381-385, 1981 Tarter RE, Switala J, Arria A, Plail J, Van Thiel DH: Quality of life before and after orthotopic hepatic transplantation. Arch Intern Med 151:1521-1526,199l Hicks FD, Larson JL, Ferrans CE: Quality of life after liver transplant. Res Nurs Health 15:111-119, 1992 Bunzel B, Grundbock A, Laczkovics A, Holzinger C, Teufelsbauer H: Quality of life after orthotopic heart transplantation. J Heart Lung Transplant 10:455459, 1991 Craven J, Bright J, Lougheed Dear CL: Psychiatric, psychosocial and rehabilitative aspects of lung transplantation. Clin Chest Med 11:247-257, 1990 Hirt SW, Hamm M, Schafers HJ, et al: Patient rehabilitation following lung and heart-lung transplantation. Transplant Proc 25:1296-1297, 1993 Paris W, Woodbury A, Thompson S, et al: Social rehabilitation and return to work after cardiac transplantation-a multicenter survey. Transplantation 53: 433438,1992 Robinson LR, Switala JA, Tarter RE, Nicholas JJ: Functional outcome after liver transplantation: a preliminary report. Arch Phys Med Rehabil 71:426427, 1990 Bonsel GJ, Essink-Bot ML, Klompmaker IJ, Sloof MJH: Assessment of the quality of life before and following liver transplantation. Transplantation 53: 796-800, 1992 Leyendecker B, Bartholomew U, Neuhaus R, et al: Quality of life of liver transplant recipients. Transplantation 56:561-567, 1993 Trepacz PT, Levenson JL, Tringali RA: Psychopharmacology and neuropsychiatric syndromes in organ transplantation. Gen Hosp Psychiatry 13:233-245, 1991 Rosenblum DS, Rosen ML, Pine ZM, Rosen SH, BorgStein J: Health status and quality of life following cardiac transplantation. Arch Phys Med Rehabil 74: 490493, 1993 Lough ME, Lindsay AM, Shinn JA, Stotts NA: Impact of symptom frequency and symptom distress on selfreported quality of life in heart transplant recipients. Heart Lung 16:193-200,1987 Mai F, McKenzie FN, Kostuk WJ: Psychosocial adjustment and quality of life following heart transplantation. Can J Psychiatry 35:223-227, 1990 Craven J: Psychiatric aspects of lung transplant. Can J Psychiatry 35:759-764, 1990 Trepacz PT, Brenner R, Van Thiel DH: A psychiatric study of 247 liver transplantation candidates. Psychosomatics 30:147-153, 1989 Bart CA: Personality, cognitive appraisal, and adjustment in lung transplant recipients. Unpublished doctoral dissertation, York University, North York, Ontario, 1992
Quality of Life and Transplantation 20. Riether AM, Smith SL, Lewison BJ, Cotsonis GA, Epstein CM: Quality of life changes and psychiatric and neurocognitive outcome after heart and liver transplantation. Transplantation 54444450, 1992 21. Surman OS, Dienstag JL, Cosimi AB, Chauncey S, Russell PS: Liver transplantation: psychiatric considerations. Psychosomatics 28:615-621, 1987 22. Tarter RE, Van Thiel DH, Hegedus AM, Schade RR, Gavaler JS: Neuropsychiatric status after liver transplantation. J Lab Clin Med 103:776-782, 1984 23. Tarter RE, Switala J, Arria A, Plail J, Van Thiel DH: Subclinical hepatic encephalopathy: comparison before and after orthotopic liver transplantation. Transplantation 50:632437, 1990 24. Dew MA, Simmons RG, Roth LH, et al: Psychosocial predictors of vulnerability to distress in the year following heart transplantation. Psycho1 Med 24:929945, 1994 25. Mai F: Psychiatric aspects of heart transplantation. Br J Psychiatry 163:285-292, 1993 26. Surman OS: Psychiatric aspects of liver transplantation. Psychosomatics 35:297-307, 1994 27. Leedham B, Meyerowitz BE, Muirhead J, Frist WH: Positive expectations predict health after heart transplantation. Health Psychology 14:74-79, 1995 28. Heyink J, Tymstra T, Sloof MJH, Klompmaker I: Liver transplantation-psychosocial problems following the operation. Transplantation 49:1018-1019, 1990 29. Ware JE, Snow KK, Kosinski M, Gandek B: SF-36 Health Survey: Manual and Interpretation Guide. Boston, The Health Institute, 1993 30. Veit CT, Ware JE: The structure of psychological distress and well-being in general populations. J Consult Clin Psycho1 51:730-742, 1983 31. Ware JE, Manning WG, Duan N, Wells KB, Newhouse JP: Health status and the use of outpatient mental health services. Am Psycho1 39:1090-1100, 1984
32. Weinstein MC, Berwick DM, Goldman PA, Murphy JM, Barsky AJ: A comparison of three psychiatric screening tests using receiver operating characteristics (ROC) analysis. Med Care 27~593-607, 1988 33. Spielberger CD, Vagg PR, Barker LR, et al: The factor structure of the State-Trait Anxiety Inventory. In Sarason IG, Speilberger CD feds), Stress and Anxiety, Vol 7. New York, Hemisphere, 1980 34. Shear MK, Klosko J, Fyer MR: Assessment of Anxiety Disorders. In Wetzler S ted), Measuring Mental Illness: Psychometric Assessment for Clinicians. Washington, American Psychiatric Press, Inc, 1989, pp 113138 35. Cutrona EE: Transition to college: loneliness and the process of social adjustment. In Peplau SA, Perlman D feds), Loneliness: A Sourcebook of Current Theory, Research and Therapy. New York, Wiley-Interscience, 1982 36. Irvine J, Logan S, Olmsted M: Development of the Toronto General Health Survey. Unpublished manuscript, Department of Psychology, The Toronto Hospital, Toronto, Canada, 1994 37. Devins GM, Binik YM, Hutchinson TA, Hollomby DJ, Barre PE, Buttmann RD: The emotional impact of end-stage renal disease: importance of patients’ perceptions of intrusiveness and control. Int J Psychiat Med 1986;13:327-343 38. Devins GN, Edworthy SM, Seland TP, Kelin G, Paul LC, Mandin H: Comparison of illness intrusiveness across rheumatoid arthritis, end-stage renal disease, and multiple sclerosis. J Nerv Ment Dis (in press) 39. Abbey S, Devins GM, Littlefield C, Fiducia D, Cardella C, Greig I’, Maurer J, Levy G: Illness intrusiveness and quality of life in liver, heart and lung transplant recipients. Submitted for publication, 1995
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Quality of Life Following Transplantation Heart, Liver, and Lungs
of the
Christine Littlefield, Ph.D., Susan Abbe , M.D., Denise Fiducia, Ph.D., Carl Cardella, M.D., Paul Greig, M.D., e ary Levy, M.D., Janet Maurer, M.D., and Timothy Winton, M.D. Abstract: The purpose of this sfudy was to describe the quality of life of patients who have received a transplant of the heart, liver, and lungs. We wished to document how the different patient groups fared in relation to each other with respect to physical, psychological, and social functioning, as well as in relation to published normative data. We also wished to identify factors that contribute to better functioning. We sent out a questionnaire by mail and received responses from 55 heart, 149 liver, and 59 lung transplant recipients (82% response rate). Measures included the SF-36, Mental Health Inventory, the State Anxiety Inventory, the UCLA Loneliness ScaleRevised, a quality of life measure that rated degree of improvement since transplantation, a measure of degree of difficulty in following medical and lifestyle regimens, sleep disturbance, and the Illness Intrusiveness Rating Scale. Results indicated that lung transplant patients reported better functioning than heart or liver transplant patients in all three domains of physical, psychological, and social functioning. Lung patienfs’ level of functioning was equivalent to or better than published norms for the SF-36. Heart and liver recipients reported equivalent functioning to published norms in some domains, but reported impairment in the areas of physical and social functioning. Heart patients especially reported greater intrusiveness of their illness on their daily lives and indicated more difficulty complying with their lifestyle regimen. In all three groups, a large majority of patients reported feeling that life had improved since transplant with respect to health, energy level, activity level, and overall qualify of life. Fewer patients reported improvements in the areas of sex life, marriage, family relationships, and social relationships. Where there were differences Departments of Psychology (C.L., D.F.), Psychiatry (C.L., S.A.), Medical Psychiatry (S.A.), Medicine (CC., G.L., J.M.), Division of Nephrology (C.C.), and Surgery (l?G., T.W.), The Toronto Hospital, University of Toronto, Toronto, Ontario, Canada; the Multi Orean Transulant Program (G.L.), and Transplant Program (J.M.), Cleveland Clinic,Cleveland, OH. _ Address reprint requests to: Dr. Susan Abbey, Department of Psychiatry, The Toronto Hospital, EN%212, 200 Elizabeth Street, Toronto, Ontario M5G 2C4, Canada.
36s ISSN 0163-8343/96/$15.00 I’11 SOl63-8343(96)00082-5
among the three patient groups, again if was the lung patients who reported more improvement in life since transplantation. Patients with better physical functioning tended to have more energy and pep, to be younger, to see themselves as being in better health, to feel less intrusion on their lives of their illness, and to be employed. Those with better psychological functioning fended to report less sleep disturbance, less loneliness, better social functioning, more vitality, and to be older. Better social functioning was associated with better mental health, less illness intrusiveness, and less role impairment as a result of physical or emotional factors. Relatively few patienfsroughly a quarter of the total sample-reported that they were working either full or part time. We conclude that fransplanfation results in improved quality of life overall, but that problems persist for some patients in their physical and social functioning. Interventions aimed at improving rehabilitation in specific targeted areas may enable patients to resume a more fulfilling lifestyle posttransplant. 0 1996 Elsevier Science Inc.
Introduction Vital organ transplantation is a dramatic intervention that has the potential to prolong the lives of individuals at the end stage of a number of heart, liver, and lung diseases. It is an intervention of last resort. When successful, the life-saving benefits of transplantation are obvious. However, there is growing recognition within the field that survival is not the only yardstick by which to measure treatment effectiveness. Improved quality of life is necessary in order to justify the personal and societal costs associated with this most invasive of surgical procedures 111. A few studies to date have examined quality of life following heart and liver transplantation but very little literature exists on the quality of life of patients following lung transplan-
General Hospital Psychiatry 18, 36S475, 1996 0 1996 Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
Quality of Life and Transplantation
tation. The commonly accepted parameters of quality of life include physical, psychological, and social functioning.
based on whether they were working pretransplant and/or had sufficient health insurance to cover the costs of transplantation.
Physical Functioning
Psychological
Physical functioning typically refers to the physical capability of patients to perform their normal daily activities (e.g., mobility, exercise, work, recreation). It can also refer to the presence of physical symptoms and to the frequency of medical interventions (e.g., number of days in the hospital). All studies that have examined the physical functioning of patients who have survived heart and liver transplantation have reported improvements when physical capabilities and medical interventions are examined [24]. However, there is some suggestion that functional capacity decreases with time since transplant [5]. Ability to return to work, a factor that many medical practitioners use to determine successful rehabilitation, differs widely from center to center, averaging about 50% [4,6-101. Bonsel et al. [ll] compared transplanted liver patients at 3 months, 1 year, 2-5 years, and 6-10 years posttransplant and reported that although the number of hours spent in “working activity” (including paid and unpaid work) increased with time since transplant, patients failed to put in an average B-hour working day at any time period. Physical symptoms experienced by patients following transplantation can adversely affect quality of life. Potential side effects associated with the continued use of immunosuppressants include nephrotoxicity, increased susceptibility to lymphoma, tremors, hypertension, gum enlargement, infections, changes in facial shape, hair growth, fever, pins and needles in extremities, among other complaints 112,131. In a number of studies physical symptoms, particularly generalized weakness and fatigue, have been reported to be problematic for a significant proportion of transplant patients [1,12,141. For men, impotence has been reported to be an especially distressing symptom [15,16]. In at least one study, physical symptomatology has been reported to increase with time since transplant [5]. On balance, then, although many patients report improved physical functioning posttransplant, significant problems remain. Patients complain of physical symptoms that, while they are not life threatening, can impact adversely upon quality of life. Moreover, there is wide variability in the reported rates of return to work. This may reflect bias in the selection of patients for transplantation,
Psychological functioning usually refers to the presence of psychological distress (e.g., symptoms of anxiety, depression) or conversely, the level of wellbeing or positive affect reported by patients. Severe distress is common among those awaiting transplantation. Mai et al. 1161 reported that 52% of 27 heart transplant patients had a psychiatric diagnosis, most commonly involving anxiety and depression, prior to transplantation. Craven 1171 reported that 50% of 116 patients who presented for assessment for lung transplantation reported a current or past psychiatric history, and of 57 patients on the lung transplant waiting list, 21% developed a psychiatric disorder while waiting, most frequently involving anxiety. Trepacz et al. 1181 reported that 49% of 247 liver transplant candidates had a psychiatric diagnosis, most often involving delirium or an adjustment disorder. Depressive symptomatology has been found to decrease among heart, liver, and lung recipients after transplantation [16,19,20], although there is a paucity of carefully conducted prospective research tracking the same patients over time. Following liver transplantation, severe preoperative hepatic encephalopathy has been found largely to resolve 121,221, although even in patients with subclinical pretransplant hepatic encephalopathy, there is some residual cognitive impairment following liver transplantation 1231. There is the suggestion that a significant minority of patients experience notable ongoing distress following transplantation. For example, one-third of a sample of heart recipients continued to have high distress levels at all follow-up assessments in the first year posttransplant 1241. In another study, longer-term liver transplant recipients (>2 years) had higher depression and anxiety scores than shorter-term patients (~2 years) 151. Continued psychological distress may be related to ongoing medical problems, or the threat of such problems occurring in the future 1251. Symptomatology associated with immunosuppressant medication is more likely to occur with time and is a major source of distress for many patients 1261. In summary, psychological distress and psychiatric disorders are quite common in persons awaiting transplantation. The few studies that have followed patients through the transplant experience suggest
Functioning
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C. Littlefield et al.
that these problems resolve somewhat postoperatively. However, the prevalence and course of psychiatric disorders and the variability of psychological distress over time has yet to be documented comprehensively The potential importance of such research is demonstrated by Caine et al. 121, who reported that better pretransplant functioning in the areas of mobility, energy level, quality of sleep, and emotional reactions predicted a shorter length of stay in the hospital following heart transplantation. These factors also predicted return to work and the resumption of activities and hobbies at 3 months posttransplant. Though these findings are likely explained in part by severity of illness and debilitation pretransplant, psychological state and expectations about recovery and rehabilitation may have contributed as well. Indeed, in another study of heart transplant recipients 1271, positive expectations pretransplant predicted good mood, adjustment, and quality of life 6 months posttransplant, even in patients who experienced complications. It has always been a truism to say that a positive attitude contributes to patients’ recovery. Research in support of this belief ought to provide the impetus for psychological interventions aimed at helping transplant patients form and maintain positive attitudes and expectations about their own recovery
Social Functioning Social functioning can refer to the amount of time spent in social interactions, the degree to which social roles are fulfilled, or the degree to which illness interferes with social functioning. We expect social functioning to improve after transplantation, and to some extent it does, although there is surprisingly little research on this aspect of quality of life following transplantation. In one study 141, liver transplant recipients and their family members both reported improved social performance and less burden on the family compared with patients’ pretransplant functioning. Patients’ own reports indicated that they were more able to participate in normal recreational activities and pastimes after transplant. However, these patients were still impaired in their social functioning compared with a normal control group. With regard to family roles, Heyink et al. 1281 reported that a third of their liver recipients, interviewed an average of 3% years after transplantation, continued to find it difficult to establish a new role or function within the family. Many of these patients found that other fam-
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ily members resisted their attempts to resume a healthy family role. Although these findings are suggestive, comprehensive research documenting social functioning among transplant recipients is sparse indeed. Questions remain about the effect of transplantation on marital or family relationships over time, as well as about patients’ ability to resume their former social and recreational lives posttransplant. Anecdotally, one factor that patients often mention as a barrier to social functioning is their concern about getting infected through exposure to others, especially in the winter. To conclude, most of the quality of life studies in the transplant literature to date have reported on fairly small numbers of patients and have limited their assessment to only some of the relevant domains of quality of life rather than taking a comprehensive approach. Most studies fail to anchor the functioning of transplant patients within the context of normal functioning. Only one study has compared the quality of life of patients receiving different organ transplants 1201. Often, studies have restricted their focus to the first year posttransplantation. Most studies have demonstrated some improvement in quality of life among transplant survivors, but there is some indication that for a nontrivial minority of patients, life after transplant is accompanied by significant impairment and distress. The newness of this field is reflected in the fact that variables that might predict adjustment and quality of life following transplantation remain largely unexplored.
Study Objectives There were three major objectives of this study. First, the study was designed to generate descriptive data about the quality of life of a Canadian sample of heart, liver, and lung transplant recipients. In particular, we were interested in documenting the level of physical, psychological, and social functioning experienced by patients following transplantation. We were interested in how the heart, liver, and lung patients fared in relation to each other, as well as in relation to published norms for other patient groups, and the general nontransplanted population. Secondly, we wanted to investigate the interrelationships among the various quality of life indices. We wished to identify both factors that are associated with better functioning and specific indicators of poor functioning. Thirdly, the study was designed to test the usefulness of
Quality of Life and Transplantation
published psychometric instruments in this population. Standardized quality of life instruments have had only limited use in the transplant population and we wished to begin to generate some normative data.
Method Sample The sample was drawn from the Multi Organ Transplant Program of The Toronto Hospital in Toronto, Canada. The sample consisted of all patients awaiting or surviving transplantation of the heart, liver, and lungs as of May 30, 1993. Patients were excluded from the study because of inability to read and write English or marked medical morbidity (i.e., prolonged hospitalization with significant weakness or neurological impairment which precluded ability to complete the study). These exclusion criteria eliminated less than 10% of the total sample. Questionnaires were sent to 363 patients.
Procedure The study was a cross-sectional mail survey, Reminders and a second copy of the survey were sent to nonresponders 1 month following the initial mailing. The study was approved by the Human Subjects Review Committee of the University of Toronto and The Toronto Hospital. Respondents were asked to return a signed copy of the consent form with their questionnaires.
Instruments The questionnaire package consisted of an introductory letter outlining the purpose of the study, an information sheet with answers to commonly asked questions about the study, consent forms, and the questionnaire. The questionnaire incorporated a series of instruments assessing various aspects of physical, psychological, and social functioning. In addition, basic demographic information was obtained. The questionnaire included the following scales. Medical Outcome Study 36-Item Short-Form Health Survey (SF 36) 1291. This 36-item survey was developed for use in quality of life and medical outcome studies. It has been used widely in a range of different medical conditions and has been demonstrated to have adequate reliability and validity.
Normative data are available for the general population and for patients with congestive heart failure and respiratory failure, illnesses that are antecedent conditions for the heart and lung transplant patients. The SF-36 is made up of nine subscales: physical functioning, role physical, bodily pain, general health perception, vitality, social functioning, role emotional, mental health, and change in health. Mental Health Inventory (MHI) 1301. This selfadministered questionnaire was developed parallel to the SF-36 described above. It has demonstrated reliability and validity 130,311. For the purposes of this study, a shortened, 18-item version of the MHI was used 1321, consisting of five subscales: anxiety, depression, loss of behavioral/emotional control, positive affect, and interpersonal ties. State Anxiety Inventory. The state scale of the Spielberger State-Trait Anxiety Inventory 1331 is a 20-item inventory of anxiety which has been widely used in a variety of psychological and medical studies. The state scale is designed to measure feelings that are occurring at the time the questionnaire is being completed, thus may fluctuate, depending on specific situational factors [34]. UCLA Loneliness Scale-Revised [351. This 20item measure assesses the quality of relationships with others. It was used to measure degree of connectedness with other people. It consists of two subscales-loneliness and companionship and a total loneliness score. The scale has demonstrated validity and reliability Quality of Life. Patients were asked to indicate the extent to which their quality of life has altered as a result of transplantation. The instructions read, “To what extent did the following aspects of your life change for the better or worse as a result of going through a transplant?” Patients were asked to rate eight aspects of their lives on a 5-point scale ranging from ‘much better’ to ‘much worse.’ The eight aspects were health, energy level, activity level, sex life, marriage, family relationships, social relationships, and overall quality of life. Difficulties with Adherence. Patients were asked to rate the degree of difficulty they have following their prescribed medical and lifestyle regimens. Ratings were made on a 4-point rating scale ranging from ‘not at all’ to ‘a lot.’ The instructions read, “Do
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C. Littlefield et al. Table 1. Demographic
features of transplant groups
Age ZII Gender-% male Marital status-% married Work status-% working PT or FT Education-% > high school Living arrangements-% living alone
Heart (n = 55)
Liver (n = 149)
Lung (n = 59)
53.19 (9.3) 87.3 80.0 16.4 48.1 7.3
50.03 (11.9) 47.0 81.5 34.0 53.8 8.8
46.93 (11.6) 59.3 69.0 29.3 50.8 13.8
p<
.02” .001”~’ ns .05 ns ns
“Heart # Lung, p < .05. bLiver # Lung, p < .05. ‘Heart # Liver, p < .05. # indicates significant
difference between groups on pair-wise comparison.
you have difficulty following your post-transplant medical regime in any of the following areas?” The eight areas were taking medications regularly, coming in for clinic regularly, undergoing biopsies when necessary, undergoing other invasive procedures, abstaining from smoking, abstaining from alcohol, staying in shape, and keeping weight down.
Sleep Disturbance. This 7-item scale measures the amount of sleep disturbance experienced by patients during the previous 2 weeks. Patients are asked to rate on a 5-point scale ranging from ‘not at all’ to ‘a great deal,’ aspects of their sleep-related behavior, including trouble falling asleep, soundness of sleep, broken sleep, troublesome dreams, difficulty awakening, feeling tired upon awakening, and early morning wakening. This scale was taken from the Toronto General Health Survey 1361 and has been applied to other illness populations (most notably cardiac). Validity and reliability studies are ongoing. Illness Intrusiveness Ratings Scale L371. This 13item scale obtains patients’ perceptions of the degree to which their transplant and the associated posttransplant medical regimen interferes with 13 life domains including work, active recreation, passive recreation, financial situation, relationship with spouse, sex life, family relations, other social relations, self-expression and self-improvement, religious expression, and community and civic involvement. The instrument has been used in a variety of medical conditions including end-stage renal disease, multiple sclerosis, and rheumatoid
40s
arthritis 1381 but has not yet been used with transplant patients. A full description of the results using this measure are reported elsewhere [391.
Sexual Difficulties. Men were asked, “Since you have been ill and especially in the past 2 weeks, have you had any problems with impotence?” Ratings were made on a 4-point scale ranging from ‘not at all’ to ‘all of the time.’ Data Analysis The data were tabulated and descriptive statistics are reported. A variety of analyses including Chisquares, correlations, one-way analysis of variations (ANOVAs), and regressions were used to describe the patient sample, to contrast the three organ groups with regard to their outcome and to compare patients endorsing good and poor quality of life, to compare patients with regard to selfreported compliance with medical and lifestyle regimens, and to investigate factors that were associated with physical, psychological, and social functioning. In most cases results were considered significant if p < 0.05.
Results Demographic Information A total of 298 patients responded to the survey, representing an 82% response rate overall. Analyses are restricted to the 263 posttransplant respondents. The median time since transplant was 26 months, with a mean of 32 months (SD = 23.2 months, range
Quality of Life and Transplantation
Table 2. Comparison
of heart, liver, and lung recipients
on quality of life measures
Heart SF-36 Physical functioning Role physical Role emotional Social functioning Bodily pain Mental health Vitality General health perception Change in health Mental Health Inventory Anxiety Depression Loss of behav/emot control Positive affect Emotional ties Total score State Anxiety Inventory Loneliness scale Loneliness Companionship Total score Illness Interference Illness intrusiveness Sleep disturbance
Liver
Lung
P
70.71 52.32 72.84 78.86 29.82 78.30 56.60 58.55 3.74
(22.7) (45.9) (41.5) (21.6) (11.1) (15.4) (21.2) (21.0) (1.1)
71.56 58.28 79.54 79.73 30.88 76.86 60.59 65.81 3.88
(25.9) (44.3) (32.9) (22.9) (11.6) (13.4) (23.2) (23.8) (1.3)
79.75 75.43 87.01 86.84 34.07 83.80 70.54 68.73 3.68
(23.6) (38.2) (29.7) (21.3) (10.2) (13.4) (20.4) (22.8) (1.3)
.07” .oP .09b .09
8.02 8.20 7.37 18.07 4.94 88.14 32.77
(3.34) (3.6) (3.5) (3.7) (1.2) (13.7) (10.6)
9.00 8.00 7.14 17.65 4.95 86.94 33.16
(4.31) (3.7) (3.2) (3.8) (1.3) (14.2) (11.9)
7.34 6.54 6.21 18.81 5.20 92.90 28.78
(3.25) (3.3) (2.7) (3.5) (1.0) (12.4) (9.7)
.02”
.O? .003a,b .05b,’ ns
.02”,b .lO ns .02”“” .04”
18.83 (6.6) 32.22 (5.4)
17.97 (5.9) 32.91 (4.6)
17.56 (5.8) 34.81 (4.6)
.O;sb
36.55 (10.1)
35.05 (8.7)
32.76 (9.5)
.09b
40.44 (14.2) 15.36 (5.4)
32.59 (15.1) 15.87 (5.5)
30.63 (14.8) 14.80 (5.31)
.OOlb,’ ns
“Liver f Lung, p < .05. bHeart # Lung, p < .05. ‘Heart # Liver,
p < .05.
# indicates signicant
difference between groups on pair-wise comparison.
= 1-97 months). Of the total sample, there were 55 heart patients, 149 liver patients, and 59 lung patients. These numbers reflect the relative sizes of the different programs within the Multi Organ Transplant Program. Table 1 presents the demographic features of the three transplant groups. As can be noted, the heart group was significantly older than the lung group, with the liver group in between. The heart group had significantly more males than either the liver or lung groups. More liver than heart patients were currently working either full or part time, with lung patients in between. There were no differences among groups in marital status, education level, or likelihood of living alone.
Time Since Transplant We first examined whether responses on any of our variables were influenced by the length of time since transplant. The sample was broken into three groups: patients transplanted less than 1 year ago (n
= 681, 14 years ago (M = 125), and greater than 4 years ago (n = 64). X2 analyses were conducted on the following variables by the time since transplant: type of transplant (i.e., heart, liver, or lung), length of time after transplant until the patient was feeling better, improved overall quality of life, difficulty adhering to the medical regimen, and difficulty adhering to the lifestyle regimen. One-way ANOVAs were conducted comparing the three groups on each of the five Mental Health Inventory subscales, each of the nine SF-36 subscales, the three Loneliness scales, and the sleep disruption scale. Only one analysis (less than would be expected by chance given the number of analyses) reached statistical significance: the Change in Health subscore of the SF-36 (F(2,251) = 44.01, p < .OOOl>. This score is based on a single item that asks respondents to rate the degree of change they have experienced in their health status in the preceding year. In our sample, patients who had been transplanted less than 1 year tended to report that their general health was
41s
C. Littlefield et al. ‘somewhat’ to ‘much worse’ in the past year, whereas patients who had been transplanted longer tended to report no change over the past year. Because duration of transplant did not seem to influence the variables of interest in this study overall, this variable was not included in further analyses. SF-36
Functional
Status
The SF-36 subscale scores of the three patient groups were compared using ANOVA. The means and SDS for each of the subscales are presented in Table 2. There were significant differences between at least two of the patient groups on most of the subscales. Using the least-significant difference test for pair-wise comparisons, it was found that in all cases, the lung transplant patients reported better functioning than the other organ groups. For comparative purposes, scores on these subscales were also compared with normative data available on the SF-36 1291 using a series of t-tests. Because of the large number of comparisons performed, a significance level of p s .Ol was used for these analyses. Heart transplant patients were compared with a normative sample of 216 patients with congestive heart failure (CHF); lung transplant patients were compared with a normative sample of 85 patients with chronic obstructive pulmonary disease (COPD); and each of the three transplant groups was compared with a sample of 2474 members of the general US population. There was no suitable normative group for comparison with the liver transplant patients. Medical Comparisons. Compared with their respective medical comparison groups, the heart and lung transplant recipients had significantly higher mean scores on physical functioning (t(54) = 7.57, p < .OOOl; t(58) = 7.44, p < .OOOl), role physical (t(53) = 2.87, p < .Ol; t(57) = 8.19, p < .OOOl), general health perception (t(54) = 4.06, p < .OOl; t(58), p < .OOOl), and vitality (t(52) = 4.22, p < .OOOl; t(55) = 9.39, p < .OOOl). This indicates that the transplant patients reported better functioning than the medical normative groups on each of these scales. The lung transplant group had significantly better mean scores on the mental health (t(58) = 9.03, p < .OOOl) and bodily pain (t(58) = 5.71, p < .OOl) subscales than the COPD normative means, whereas there were no differences for the heart transplant patients compared with normative data for patients with CHF on these scales. The heart transplant recipients had higher role emotional scores than the CHF
42s
comparators (t(54) = 6.11, p < .OOl), whereas there was no significant difference between the lung groups. Neither heart nor lung transplant patients differed from their respective medical comparison group on social functioning. General Population Comparisons. Compared with the general population, the heart transplant patients reported poorer physical functioning (t(54) = 4.39, p < .OOOl), role physical (t(53) = 4.59, p < .OOOl), general health perception (t(54) = 4.72, p < .OOOl), and social functioning (t(54) = 4.06, p < .OOl). The heart transplant patients’ scores were equivalent to the general population norms on bodily pain, vitality, role emotional, and mental health. The lung transplant patients reported better or equivalent scores to the general population norms for every SF-36 subscale. Scores were equivalent to the general population norms for physical functioning, bodily pain, role physical, general health perception, social functioning, and role emotional. The lung transplant group had better scores than the population norms on vitality (t(55) = 3.55, p < .OOl) and mental health (t(58) = 5.20, p < .OOOl). The liver transplant group reported lower scores than the general population norms for physical functioning 0045) = 5.88, p < .OOOl>,role physical (t(141) = 6.10, p < .OOOl), general health perception (t(144) = 3.11, p < .Ol), social functioning (t(148) = 16.90, p < .OOl), and role emotional (t(148) = 12.29, p < .OOl). Their scores were equivalent to the general population norms on bodily pain, vitality, and mental health.
Psychological
Functioning
The heart, liver, and lung groups were compared on the subscales of the Mental Health Inventory (MHI), the State Anxiety Inventory (SAI), and the Loneliness Scale. Results of these analyses are presented in Table 2. Comparisons among individual groups using the least-significant difference test revealed that the liver group reported significantly more anxiety and depression and had a lower total mental health score than the lung group. The heart group also reported higher depression scores than the lung group. Comparing the SAI scores of the three patient groups with norms for the general population, the lung recipients’ mean score fell around the 30th percentile, whereas the heart and liver recipients’ mean scores fell just above the 50th percentile. The lung recipients reported a significantly higher companionship score (indicating a
Quality of Life and Transplantation stronger sense of connectedness to other people) than each of the other two groups.
Illness Interference There was a significant difference among groups on the Illness Intrusiveness Scale (Table 2), with the heart transplant patients experiencing significantly more disruption in lifestyle as a result of their illness and its treatment than either liver or lung transplant patients. With respect to sleep disturbance, there were no differences among groups. Nor were there any differences among groups on the proportion of men reporting problems with impotence. Overall, 49% of men reported that they had no problems with impotence, 22% said they had problems some of the time, 8% had problems most of the time, and 21% had problems all of the time.
Self-Reported
Difficulties
with Adherence
Patients were asked to indicate the extent to which they encountered difficulties following their posttransplant medical regime in eight areas. Four items were grouped under the category of ‘medical regimen’ and four items were grouped under the category of ‘lifestyle regimen.’ Patients were considered to be having difficulty following either of these regimens if they endorsed a 3 or 4 on any single item within it. Comparisons among the heart, liver, and lung groups are presented in Figure 1. There were no differences among the three groups with
respect to medical regimen. Roughly a quarter of all patients reported difficulty with at least one item within the medical regimen category For lifestyle regimen, there were highly significant differences among the three groups, with 82% of the heart patients reporting difficulty with at least one lifestyle item compared with 53% of liver patients and 36% of lung patients. These differences among groups were all significant.
Quality of Life Figure 2 presents the percentage of patients in each transplant group reporting improved quality of life since transplantation on eight items. For all three groups, by far the majority of patients reported improvement in the areas of health, energy level, activity level, and overall quality of life. Fewer patients reported improvement in the areas of sex life, marriage, family relationships, and social relationships. More lung patients than heart or liver patients reported improved energy level, activity level, family relationships, social relationships, and overall quality of life.
Correlates of Physical, Psychological, Social Functioning
and
Three stepwise multiple regression analyses were performed in order to determine which variables correlated best with the three domains of quality of life of interest in this study: physical, psychological, and social functioning. The dependent variables for
100
00
Figure 1. Percentages of heart, liver, and 00 %Ol
n Hearl
PsthlS
a Liver
40
n Lung 20
lung transplant patients reporting difficulty with medical or lifestyle regimens. No significant differences among the three patient groups exist with respect to self-reported difficulties with medical regimens. However, self-reported difficulties with lifestyle regimens are significantly different among each of the three groups (p < .OOOOl).
0 MedIcal
Regimen
Lllwlyle
Regimen
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C. Littlefield et al.
a)
100
w
6a %Of PatiOIlts El LIVW
4a
mung 20
Figure 2 a, b. Percentages of heart, liver, and lung transplant patients reporting improved quality of life (QOL) since transplantation. Significantly more lung
a Health
Energy Level
Activity
Levsl
than heart or liver transplant patients reported improved energy level (p < .02); activity level (p < .0003); family relation-
100
ships (p < .07); social relationships (p < .OOOl);and overall quality of life (p < .0005).
80
60 % of
n fbm
Patlsws 40
q LIVW n Lung
20
0 Family
SOCbl
Relatlonshlps
Relationships
each analysis were, respectively, the physical functioning subscale score from the SF-36, the total score from the MHI, and the social functioning subscale score from the SF-36. Correlations were computed among the variables of interest in the study. Those variables that correlated at least Y = .20 with the dependent measure were included in that regression analysis.
into the analysis were as follows: age estimated 5% of the unique variance (f = 4.87, p < .OOOl), general health perception 4% (f = 2.80, p < .006), illness intrusiveness 1.6% (f = 2.58, p = .Ol), having a liver or lung transplant rather than a heart transplant 1% (f = 2.27, p = .02), and being employed 1% (f = 2.11, p < .04). Together these variables accounted for 49% of the variance in physical functioning.
Physical Functioning. The best predictor of physical functioning was the vitality subscale of the SF-36, accounting for 36% of the unique variance in physical functioning (t = 5.91, p < .OOOl).The unique contribution of each of the other variables allowed
Psychological Functioning. The best predictor of mental health was the absence of a sleep disturbance, accounting for 43% of the unique variance in the MHI total score (f = 6.77, p < .OOOl>.The total loneliness score accounted for 15% of the unique
445
Quality of Life and Transplantation variance (t = 6.52, p < .OOOl), social functioning 6% (t = 4.42, p < .OOOl), vitality 1% (t = 3.02, p < .003), and age 1% (t = 2.97, p < .003). Together these variables accounted for 66% of the variance in psychological functioning. Social Functioning. The best predictor of social functioning was mental health, accounting for 35% of the unique variance (t = 4.20, p < .OOOl>.Illness intrusiveness accounted for a further 14% of the variance (t = 3.73, p = .0003), role emotional 5% (t = 3.40, p = .OOOl),general health perception 2% 0 = 2.48, p = .Ol), and role physical 1% (f= 2.15, p = .03). Together these variables accounted for 57% of the variance in social functioning.
Discussion On measures of functional status, the lung transplant recipients consistently reported better functioning than the liver and heart transplant groups. This tendency covered a range of domains, across many physical, psychological, and social aspects of quality of life. Lung transplant patients scored better than a normative comparison group of patients with COPD across most domains, and on all domains they were performing at least as well as the general population. With respect to mental health and vitality, they did better. Compared with the general population, heart transplant patients demonstrated significant impairment with respect to physical and social functioning. However, they did have better physical functioning scores across several domains than a normative comparison group of patients with congestive heart failure. The liver transplant group also were significantly more impaired than the general population on physical and social functioning. Heart and liver recipients reported problems with work or other daily activities as a result of their physical health, as well as interference with normal social activities with family and friends. In addition, heart patients feel most strongly the intrusiveness of their illness on their daily lives. More heart patients than any others also reported difficulty complying with some aspect of their lifestyle regimen posttransplant. Somewhat surprisingly, given these findings, both the heart and liver recipients’ mental health scores were equivalent to the general population norms, suggesting that although they felt that their health was somewhat compromised, they were coping reasonably well with their situation. The vast majority of patients in all groups re-
ported improvements in the health, energy, and activity domains of quality of life. Fewer patients reported improvements in marital, sexual, and family relationships. This suggests that interpersonal problems require specific interventions. Many personal problems that exist prior to illness are put on hold while the patient is awaiting transplantation, but other problems develop as a result of the disruption in lifestyle associated with the severe illness of a family member. Clearly, transplantation is not a panacea capable of fixing all problems in the lives of persons receiving one. It often comes as a surprise to families that once the life-and-death issues of transplantation are dealt with, day-to-day issues resurface. In our experience, patients and families often underestimate the degree of adjustment that is required to resume a more ‘normal’ life after transplantation. Family roles require readjustment and as family members resume their other activities, the patient is often left at loose ends. A provocative question to emerge from these data is, Why did the lung transplant group report consistently better performance than the heart and liver recipients? One reason may be the striking contrast between respiratory insufficiency pretransplant and normal breathing posttransplant, accounting for a positive “glow” that generalizes to other aspects of life. Other reasons may be more specific to the Toronto Lung Transplant Program itself which includes a psychosocial assessment prior to transplant to identify difficulties early in the process and institute interventions where necessary While waiting, most patients and their support person attend a weekly support group. They must also attend a rehabilitation program three times a week. These patients often socialize and provide mutual support informally in the cafeteria and coffee shop. All of these factors may contribute to improved quality of life posttransplant, from both a physical and emotional perspective. Adherence to strict medical and lifestyle regimens posttransplantation is a strong expectation of each of the medical teams. In our total sample, roughly a quarter of patients reported having difficulty following some aspect of their medical regimen. When it came to following the lifestyle regimen, over 80% of heart patients, more than half of the liver patients, and about a third of lung patients reported some difficulty Given the importance to continued survival of adherence to medical and lifestyle regimens, these numbers are alarming. That so many people reported difficulties suggests
45s
C. Littlefield et al. the need to target and reinforce healthy lifestyle behaviors on an ongoing basis. Finally, we identified sets of variables that correlate best with functioning across the three quality of life domains. Persons who reported being more physically active also tended to have more energy and pep, be younger, see themselves as being in better health, feel less intrusion by their illness on their daily lives, and to be employed. Persons who functioned better psychologically tended to sleep better, be less lonely, have better social functioning, have more vitality, and to be older. With respect to social functioning, when patients perceive that illness intrudes on their lives and that their general health is poor, they are less able to maintain their social relationships. Relatively few patients reported that they were working-roughly a quarter of our sample overall. In another study 191, three factors found to negatively influence whether heart transplant recipients worked posttransplant were their length of medical disability pretransplant, a self-perception of being unable to work, and the potential loss of health insurance or disability income. These factors may have influenced our results as well. Anecdotally, many patients tell us that given their uncertain future, they prefer not to spend their remaining years working, particularly if that work was not very rewarding. They are also reluctant to give up disability benefits for fear that they may become ill in the future. The conclusions we can draw here are, of course, limited by the cross-sectional design of this preliminary study. A systemic program of prospective research is necessary to identify with confidence factors that influence quality of life posttransplant. Further research is needed into social and family problems, as well as into the sexual functioning and sleep patterns of patients posttransplant. Such research is also needed to render information on the design of interventions to enhance adjustment posttransplant. Among transplant recipients such interventions could be aimed at improving rehabilitation and enabling patients to participate more fully in a personally
meaningful
3.
4.
5. 6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
lifestyle.
The authors wish to thank the Department of Psychiatry Research Fund for its generous support of this project. We also thank Terry Knack for generously volunteering her time for data entry.
References 1. O’Brien BJ, Buxton MJ, Ferguson BA: Measuring the effectiveness of heart transplant programmes: quality
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2.
17. 18.
19.
of life data and their relationship to survival analysis. J Chron Dis 4O(Suppl 1):137S-1535,1987 Caine N, Sharples LD, English TAH, Wallwork J: Prospective study comparing quality of life before and after heart transplantation. Transplant Proc 22:14371439, 1990 Gaudiani VA, Stinson EB, Alderman E, et al: Longterm survival and function after cardiac transplantation. Ann Surg 194:381-385, 1981 Tarter RE, Switala J, Arria A, Plail J, Van Thiel DH: Quality of life before and after orthotopic hepatic transplantation. Arch Intern Med 151:1521-1526,199l Hicks FD, Larson JL, Ferrans CE: Quality of life after liver transplant. Res Nurs Health 15:111-119, 1992 Bunzel B, Grundbock A, Laczkovics A, Holzinger C, Teufelsbauer H: Quality of life after orthotopic heart transplantation. J Heart Lung Transplant 10:455459, 1991 Craven J, Bright J, Lougheed Dear CL: Psychiatric, psychosocial and rehabilitative aspects of lung transplantation. Clin Chest Med 11:247-257, 1990 Hirt SW, Hamm M, Schafers HJ, et al: Patient rehabilitation following lung and heart-lung transplantation. Transplant Proc 25:1296-1297, 1993 Paris W, Woodbury A, Thompson S, et al: Social rehabilitation and return to work after cardiac transplantation-a multicenter survey. Transplantation 53: 433438,1992 Robinson LR, Switala JA, Tarter RE, Nicholas JJ: Functional outcome after liver transplantation: a preliminary report. Arch Phys Med Rehabil 71:426427, 1990 Bonsel GJ, Essink-Bot ML, Klompmaker IJ, Sloof MJH: Assessment of the quality of life before and following liver transplantation. Transplantation 53: 796-800, 1992 Leyendecker B, Bartholomew U, Neuhaus R, et al: Quality of life of liver transplant recipients. Transplantation 56:561-567, 1993 Trepacz PT, Levenson JL, Tringali RA: Psychopharmacology and neuropsychiatric syndromes in organ transplantation. Gen Hosp Psychiatry 13:233-245, 1991 Rosenblum DS, Rosen ML, Pine ZM, Rosen SH, BorgStein J: Health status and quality of life following cardiac transplantation. Arch Phys Med Rehabil 74: 490493, 1993 Lough ME, Lindsay AM, Shinn JA, Stotts NA: Impact of symptom frequency and symptom distress on selfreported quality of life in heart transplant recipients. Heart Lung 16:193-200,1987 Mai F, McKenzie FN, Kostuk WJ: Psychosocial adjustment and quality of life following heart transplantation. Can J Psychiatry 35:223-227, 1990 Craven J: Psychiatric aspects of lung transplant. Can J Psychiatry 35:759-764, 1990 Trepacz PT, Brenner R, Van Thiel DH: A psychiatric study of 247 liver transplantation candidates. Psychosomatics 30:147-153, 1989 Bart CA: Personality, cognitive appraisal, and adjustment in lung transplant recipients. Unpublished doctoral dissertation, York University, North York, Ontario, 1992
Quality of Life and Transplantation 20. Riether AM, Smith SL, Lewison BJ, Cotsonis GA, Epstein CM: Quality of life changes and psychiatric and neurocognitive outcome after heart and liver transplantation. Transplantation 54444450, 1992 21. Surman OS, Dienstag JL, Cosimi AB, Chauncey S, Russell PS: Liver transplantation: psychiatric considerations. Psychosomatics 28:615-621, 1987 22. Tarter RE, Van Thiel DH, Hegedus AM, Schade RR, Gavaler JS: Neuropsychiatric status after liver transplantation. J Lab Clin Med 103:776-782, 1984 23. Tarter RE, Switala J, Arria A, Plail J, Van Thiel DH: Subclinical hepatic encephalopathy: comparison before and after orthotopic liver transplantation. Transplantation 50:632437, 1990 24. Dew MA, Simmons RG, Roth LH, et al: Psychosocial predictors of vulnerability to distress in the year following heart transplantation. Psycho1 Med 24:929945, 1994 25. Mai F: Psychiatric aspects of heart transplantation. Br J Psychiatry 163:285-292, 1993 26. Surman OS: Psychiatric aspects of liver transplantation. Psychosomatics 35:297-307, 1994 27. Leedham B, Meyerowitz BE, Muirhead J, Frist WH: Positive expectations predict health after heart transplantation. Health Psychology 14:74-79, 1995 28. Heyink J, Tymstra T, Sloof MJH, Klompmaker I: Liver transplantation-psychosocial problems following the operation. Transplantation 49:1018-1019, 1990 29. Ware JE, Snow KK, Kosinski M, Gandek B: SF-36 Health Survey: Manual and Interpretation Guide. Boston, The Health Institute, 1993 30. Veit CT, Ware JE: The structure of psychological distress and well-being in general populations. J Consult Clin Psycho1 51:730-742, 1983 31. Ware JE, Manning WG, Duan N, Wells KB, Newhouse JP: Health status and the use of outpatient mental health services. Am Psycho1 39:1090-1100, 1984
32. Weinstein MC, Berwick DM, Goldman PA, Murphy JM, Barsky AJ: A comparison of three psychiatric screening tests using receiver operating characteristics (ROC) analysis. Med Care 27~593-607, 1988 33. Spielberger CD, Vagg PR, Barker LR, et al: The factor structure of the State-Trait Anxiety Inventory. In Sarason IG, Speilberger CD feds), Stress and Anxiety, Vol 7. New York, Hemisphere, 1980 34. Shear MK, Klosko J, Fyer MR: Assessment of Anxiety Disorders. In Wetzler S ted), Measuring Mental Illness: Psychometric Assessment for Clinicians. Washington, American Psychiatric Press, Inc, 1989, pp 113138 35. Cutrona EE: Transition to college: loneliness and the process of social adjustment. In Peplau SA, Perlman D feds), Loneliness: A Sourcebook of Current Theory, Research and Therapy. New York, Wiley-Interscience, 1982 36. Irvine J, Logan S, Olmsted M: Development of the Toronto General Health Survey. Unpublished manuscript, Department of Psychology, The Toronto Hospital, Toronto, Canada, 1994 37. Devins GM, Binik YM, Hutchinson TA, Hollomby DJ, Barre PE, Buttmann RD: The emotional impact of end-stage renal disease: importance of patients’ perceptions of intrusiveness and control. Int J Psychiat Med 1986;13:327-343 38. Devins GN, Edworthy SM, Seland TP, Kelin G, Paul LC, Mandin H: Comparison of illness intrusiveness across rheumatoid arthritis, end-stage renal disease, and multiple sclerosis. J Nerv Ment Dis (in press) 39. Abbey S, Devins GM, Littlefield C, Fiducia D, Cardella C, Greig I’, Maurer J, Levy G: Illness intrusiveness and quality of life in liver, heart and lung transplant recipients. Submitted for publication, 1995
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