Living with heart failure: depression and quality of life in patients and spouses

Living with heart failure: depression and quality of life in patients and spouses

QUALITY OF LIFE Living With Heart Failure: Depression and Quality of Life in Patients and Spouses Jan Ma˚rtensson, RN, PhD,a,b,c Kathleen Dracup, RN,...

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QUALITY OF LIFE

Living With Heart Failure: Depression and Quality of Life in Patients and Spouses Jan Ma˚rtensson, RN, PhD,a,b,c Kathleen Dracup, RN, PhD,d Cheryl Canary, RN, PhD,e and Bengt Fridlund, RN, PhDb,c,f Background: Although spouses are a key support for patients with heart failure, and help them remain in the community, no one has studied patient–spouse pairs to determine the nature of their experience. Therefore, we conducted a study of patients and spouses to compare their levels of depression and health-related quality of life (HRQOL), and to identify factors that contribute to depression and HRQOL in patient–spouse pairs. Methods: Forty-eight couples, in which all patients were men with heart failure, were recruited from a university-affiliated, outpatient heart failure clinic. Data were collected using the Beck Depression Inventory, the 12-item Short Form (that measures physical and mental components of QOL), and the 6-minute walk test. Results: Patients with heart failure were significantly more depressed and had poorer physical quality of life compared with spouses. Patients’ depression was correlated with their own functional status and mental quality of life, with the combination of 6-minute walk distance and mental QOL contributing 51% of the variance in patient depression. Spouse depression and HRQOL did not significantly influence patient depression. In contrast, spouses’ depression was related to their husbands’ functional status and employment, as well as their own mental QOL. The mental component of spouse QOL and the age of the patient accounted for 33% of the adjusted variance in spousal depression. Conclusions: Patients with heart failure and their spouses experience significantly different levels of depression and physical QOL. In developing interventions, it may be important to take these differences into account and focus on their unique needs as well as those issues that affect the couple together. Interventions that improve patient functional status may result in decreased depression and improved HRQOL on the part of both patients and spouses. J Heart Lung Transplant 2003;22:460 – 467.

From the aDepartment of Cardiology, Ryhov County Hospital, Jo ¨nko ¨ping, Sweden; bSchool of Social and Health Sciences, Halmstad University, Halmstad, Sweden; cDepartment of Primary Health Care, Go ¨teborg University, Go ¨teborg, Sweden; d School of Nursing, University of California at San Francisco, San Francisco, California; eSchool of Nursing, California State University, Fullerton, California; and fDepartment of Medicine and Care, Faculty of Health Sciences, Linko ¨ping, Sweden. Submitted January 2, 2002; revised May 22, 2002; accepted September 24, 2002. Supported by the Research Council of Southeastern Sweden

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(FORSS); The Swedish Heart and Lung Foundation, Sweden; and the American Heart Association, Western Affiliate. Reprint requests: Jan Ma˚rtensson, RN, PhD, Department of Cardiology, Ryhov County Hospital, S-551 85 Jo ¨nko ¨ping, Sweden. Telephone: ⫹46-36-321987. Fax: ⫹46-36-322088. Email: [email protected] Copyright © 2003 by the International Society for Heart and Lung Transplantation. 1053-2498/03/$–see front matter doi:10.1016/S1053-2498(02)00818-5

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atients with chronic heart failure (HF) and their spouses face many difficult issues. Debilitating physical symptoms, role changes, frequent hospitalizations, forced retirement, financial stress and disruption of usual sources of social support characterize the disease trajectory. All these changes can lead to significant depression and reduction in quality of life in both patients1– 8 and spouses,9,10 which in turn can increase patient morbidity and mortality.11,12 Although investigators have studied psychosocial issues in patients with HF as well as in spouses, no one has studied patient–spouse pairs to determine if they experience similar changes in depression and quality of life. Such information is critical to the design of education and counseling interventions that include both the patient and spouse.13 To date, it is not known if patients and spouses have parallel experiences. It can be hypothesized, on the one hand, that couples in whom one of the partners has HF would experience similar psychosocial disruptions. The majority of patients are in their fifth or sixth decade, at minimum, and usually have been married for a relatively long time. Lives are comingled and the wide range of changes brought about by chronic HF usually affect both patient and spouse. On the other hand, it can also be hypothesized that the physical symptoms of HF are the primary source of the depression and poor quality of life that is consistently documented in patients with HF5,6,14,15 and these physical changes are not experienced by spouses. Thus, spouses may be spared many of the psychosocial sequelae documented in patients. The purpose of the study was 2-fold: (1) to determine if patients and spouses experience similar levels of depression and health-related quality of life; and (2) to identify those factors that contribute to depression and health-related quality of life in patient–spouse pairs.

METHODS Design and Sample This study utilized a 2-group, comparative design. Appropriate institutional review board approval for the study was received from the participating center and permission to contact eligible patients who volunteered was obtained from the patients’ cardiologists. Patients were being seen at a universityaffiliated, outpatient heart failure clinic on the west coast of the USA, which is also affiliated with an active cardiac transplant program. The recruitment period was from January 1999 to November 1999. Patients were included in the study if they were ⱖ18 years of age; able to speak, read and write English;

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had a left ventricular ejection fraction (EF) of ⬍40% as documented by echocardiography or ventriculography; and had symptoms of heart failure for ⱖ6 months. Patients were excluded if they had a serious co-morbid medical diagnosis (e.g., cancer or advanced renal failure). Spouses were included if they were able to speak, read and write English and were living in the same household as the patient. The institutional review board of the participating center required that patients be informed of the study through signs posted in the clinic that described the study’s purpose and procedures. Patients identified themselves as interested in participating by calling a study telephone number; therefore, no information was obtained on patients and spouses who chose not to volunteer.

Procedure Patients and their spouses who indicated an interest in participating were approached in the heart failure clinic by a research assistant or one of the study investigators. If both patient and spouse met the sample selection criteria and were willing to participate, they signed a written consent form approved by the institutional review board. Questionnaires were compiled in random order, bound into a booklet, and numerically coded to ensure subject anonymity. Couples were asked to complete the instruments during their clinic visit, but when that was not possible they were given a self-addressed, stamped envelope in which to return the completed instruments. They were instructed to complete the questionnaires without discussing their answers with each other. Functional status was assessed using the New York Heart Association (NYHA) classification and 6-minute walk distance evaluation. The NYHA classification was determined and documented by the cardiologist at the time of the clinic visit. These data were extracted from the medical record. Patients were asked to complete a 6-minute walk distance evaluation during the clinic visit. They were told to walk at a brisk pace as far as they could within the allotted time, resting as needed. No coaching occurred during the 6 minutes. The 6-minute walk has demonstrated reliability and validity.16,17 A greater distance indicates higher functional status. In an attempt to minimize differences in the method, the same physical area was utilized each time and standardized directions were given to patients.

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Instruments Depression was measured using the Beck Depression Inventory (BDI). The BDI has been used widely in chronically ill populations and is well validated.18 It is a self-reported inventory designed to measure severity of depressive mood or symptoms. It is not designed to diagnose a major depressive disorder or psychiatric condition. The 21-item inventory consists of a Likert-type scale from 0 (absence of symptom) to 3 (severe or persistent presence of symptom). Five of the BDI items pertain to somatic symptoms of depression (e.g., loss of appetite and sleep disturbance) and 16 of the items reflect non-somatic symptoms of depression (e.g., hopelessness and social withdrawal). Scores on the BDI range from 0 to 63: 0 to 9, minimal symptoms of depression; 10 to 16, mild; 17 to 29, moderate; and 30 to 63, severe.19 Health-related quality of life was assessed using the 12-item Short Form (SF-12) health survey. The SF-12 is a shorter version of the 36-item Short Form (SF-36) health survey designed to assess mental and physical health.20 The 12 items from the SF-12 are summarized as 2 scores: a physical component and a mental component; the instrument does not yield a total score. The physical component includes physical function, role limitations due to physical health problems, bodily pain and general health. The mental component reflects vitality, social functioning, role limitations due to emotional problems, and mental health (psychologic distress and psychologic well-being).21 Each of the 12 items contributes to the physical and mental component scores according to a pre-specified weight used in the calculation process. The weights are based on results from the general population in the USA, and yield standardized scores. Higher scores indicate better health status. In the general population of the USA, the SF-12 items explained ⬎90% of the variance in SF-36 physical and mental health summary measures.20

Statistical Analysis Descriptive statistics were used to characterize the study population. Paired-sample t-tests were used to evaluate the differences in BDI and SF-12 physical and mental component scores between HF patients and their spouses. Correlations between EF, NYHA class and 6-minute walk were obtained for patients, and age, employment status, BDI and SF-12 scores for both patients and spouses were also obtained. Pearson product-moment correlation coefficients

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were used for variables that were normally distributed and on an interval scale. Variables that were not normally distributed because of outliers were analyzed using Spearman’s rank correlation coefficient. Income, education and years in relationship for both the patients and spouses showed no correlation, and were therefore not included in further analyses. Univariate linear regression was used to identify the variables that could significantly predict depression and HRQOL. Multi-variate stepwise regression analyses were then used to identify which combination of variables provided the most predictive power. Statistical significance was established at p ⬍ 0.05.

RESULTS Forty-eight couples participated in the study. Although the study criteria included both men and women, only 4 of the 52 couples included had female patients. Due to the small numbers of female patients, and to provide a more homogeneous sample, female patients were excluded. The majority of patients were white (77%) and unemployed (81%). The high number of unemployed reflect the relatively advanced stage of heart failure in this sample of patients. Thirty-one of the 48 (65%) were NYHA Class III or IV with an EF of 26 ⫾ 9% (mean ⫾ SD). Patients had a mean age of 61 ⫾ 9 years. The spouses were female (100%) and white (83%), with a mean age of 57 ⫾ 10 years. Table I summarizes additional information about the sample.

Comparison of Depression and Health-Related Quality of Life There was a significant difference between patients and spouses in depressive symptoms, as reflected in BDI scores. Patients had a mean of 10.5 ⫾ 7.3, whereas spouses had a mean of 7.0 ⫾ 5.6 (p ⫽ 0.006, Table II). Using the BDI, 11 spouses were identified as having mild to moderate depression (8 mild, 3 moderate), whereas 17 patients were identified as having mild to severe depression (6 mild, 10 moderate, 1 severe). Thus, patients were significantly more depressed than spouses. When patients and spouses were compared using the 2 scales of the SF-12 (physical and mental components), a significant difference was documented in the physical, but not the mental, component between the 2 groups (p ⫽ 0.0001), with patients experiencing significantly lower physical QOL than spouses.

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TABLE I Clinical and sociodemographic characteristics of patients with heart failure (n ⫽ 48) and their spouses (n ⫽ 48) Gender Male Female Ethnicity White Hispanic Other Education ⬍ High school High school Vocational school Junior college College Graduate school Missing Employed Yes No Missing Income ⬍$15,000 $15–29,999 $30–49,999 $50–74,999 $75–100,000 ⬎$100,000 Missing Etiology of heart failure Ischemic heart disease Idiopathic cardiomyopathy Valvular heart disease Other NYHA Class I Class II Class III Class IV Age (years), mean (SD) Ejection fraction (%), mean (SD) 6-minute walk distance (meters), mean (SD)

Patients

Spouses

48 —

— 48

37 4 7

40 3 5

8 8 4 13 4 9 2

2 20 3 8 10 5 —

7 39 2

17 31 —

6 6 11 7 8 7 3

5 5 14 10 5 7 2

22 6 5 15 2 11 28 7 61 (9) 26 (9) 395 (107)

57 (10)

NYHA, New York Heart Association.

Correlates of Depression and Health-Related Quality of Life In interpreting the correlation results presented in Table III, it is important to remember that higher scores on the BDI indicate higher levels of depressive symptoms, whereas higher levels on the 2 scales of the SF-12 (physical and mental components) indicate better HRQOL. Patient depression was

directly related to NYHA class (i.e., the worse the functional status, the greater the depression) and inversely to patient 6-minute walk and the mental component of the QOL (i.e., the shorter the walk distance and the poorer the mental component of QOL, the greater the depression). Patient mental QOL and 6-minute walk distance accounted for 51% of the adjusted variance (p ⬍ 0.001), with

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TABLE II Results of paired samples t-test comparing depression and quality of life in patients with heart failure (n ⫽ 48) and their spouses (n ⫽ 48)

PCS-12 MCS-12 BDI

Patient (mean ⴞ SD)

Spouse (mean ⴞ SD)

t-test

p-value

34.8 ⫾ 6.8 47.3 ⫾ 7.1 10.5 ⫾ 7.3

40.2 ⫾ 4.4 45.5 ⫾ 6.6 7.0 ⫾ 5.6

⫺4.71 1.31 2.88

0.0001 0.197 0.006

PCS-12, Physical Component Summary in SF-12; MCS-12, Mental Component Summary in SF-12; BDI, Beck Depression Inventory.

6-minute walk distance being the first variable to enter the equation (R2 ⫽ 0.31, p ⱕ 0.001). Spouse depression was positively related to the employment status of the patient and inversely related to both the mental component of QOL of the spouse and the patient NYHA class (i.e., the poorer the spouses mental QOL and the better the functional status of the patient, the greater the depression). The mental component of spouse QOL and the age of the patient accounted for 33% of the adjusted variance in spouse depression (p ⫽ 0.003). The spouse physical component of QOL had no relationship to the depression scores of either the patient or the spouse in the univariate linear regression and therefore was not included in the multivariate stepwise regression (Table IV). The relationships between patient mental QOL scores and NYHA class, depression and physical QOL were significant (i.e., better mental QOL was related to better functional status as measured by

NYHA class, less depression, but worse physical QOL) (Table III). Patient depression and physical QOL accounted for 35% of the adjusted variance in patient mental QOL (p ⬍ 0.001), with depression being the first variable to enter the model (R2 ⫽ 0.27, p ⫽ 0.003). Spouses with higher levels of depressive symptoms and better physical QOL reported poorer mental QOL, and these 2 variables accounted for 26% of the adjusted variance in mental QOL (p ⬍ 0.001). Patient and spouse mental QOL measures were inversely related to their physical QOL (Table III), and accounted for 22% (p ⬍ 0.001) and 13% of the adjusted variance, respectively (p ⬍ 0.007). Age and employment status for both patients and spouses, and patient EF and 6-minute walk distance were not significantly related to either patient or spouse mental or physical QOL in the univariate linear regression and therefore were not included in the multi-variate stepwise regression (Table IV).

TABLE III Correlations among clinical, sociodemographic, and quality of life components for patients with heart failure (n ⫽ 48) and their spouses (n ⫽ 48) 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13.

Age of patient Age of spouse Employment status for the patient Employment status for the spouse EF NYHA 6-minute walk Patient BDI Spouse BDI Patient PCS Patient MCS Spouse PCS Spouse MCS

1

2

3

4

5

— 0.809† ⫺0.008 0.282 0.011 0.302 ⫺0.314* 0.048 ⫺0.271 ⫺0.182 ⫺0.112 ⫺0.235 0.029

— 0.107 0.337* 0.093 0.118 ⫺0.364* 0.071 ⫺0.171 ⫺0.112 ⫺0.165 ⫺0.188 0.185

— 0.052 0.289 ⫺0.102 ⫺0.235 0.272 0.297* ⫺0.112 ⫺0.021 0.265 0.141

— ⫺0.064 0.190 ⫺0.207 0.101 0.000 ⫺0.017 ⫺0.149 0.091 ⫺0.047

— ⫺0.168 0.166 ⫺0.081 0.155 0.026 0.024 0.018 ⫺0.118

NYHA, New York Heart Association (functional class); EF, ejection fraction; BDI, Beck Depression Inventory; PCS, Physical Component Summary; MCS, Mental Component Summary. *p ⬍ 0.05. † p ⬍ 0.01.

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TABLE IV Multiple regression for depression and quality of life in both patients with heart failure and their spouses Variables

Adjusted R2

BDI patient* 6-minute walk MCS patient BDI spouse* MCS spouse Age of patient PCS patient* MCS patient PCS spouse* MCS spouse MCS-patient* BDI patient PCS patient MCS spouse* BDI spouse PCS spouse

0.51 0.33 0.22 0.13 0.35 0.26



t

⫺0.48 ⫺0.46

⫺4.04 ⫺3.93

⫺0.49 ⫺0.44

⫺3.61 ⫺3.21

⫺0.48

⫺3.66

⫺0.39

⫺2.80

⫺0.47 ⫺0.31

⫺3.46 ⫺2.31

⫺0.39 ⫺0.32

⫺3.03 ⫺2.48

p 0.000 0.000 0.001 0.007 0.000 0.000

BDI, Beck Depression Inventory; 6-min walk ⫽ 6-minute walk test; MCS, Mental Component Summary of SF-12; PCS, Physical Component Summary of SF-12. *Dependent variable.

DISCUSSION This study demonstrates that patients with heart failure and their spouses are significantly different in their experience of depressive symptoms and in the physical component of QOL, with patients experiencing significantly more depression and worse physical QOL than spouses. Interestingly, neither patients nor spouses reported significant differences

in the mental component of their QOL, a scale that reflects vitality, social functioning, role limitations due to emotional problems and mental health (psychologic distress and psychologic well-being). It should also be noted that the physical component of QOL for both patients and their spouses was lower than normal (with means of 34.9 and 40.2, respectively), whereas the mental component was close to normal for both patients and spouses (with means of

TABLE III Continued 6

7

8

9

10

11

— ⫺0.370* 0.326* ⫺0.344* 0.119 ⫺0.386* 0.084 ⫺0.034

— ⫺0.504† 0.220 0.066 0.205 ⫺0.001 ⫺0.110

— 0.174 0.187 ⫺0.509† ⫺0.108 ⫺0.127

— ⫺0.188 0.095 0.201 ⫺.415†

— ⫺0.426† 0.072 0.139

— 0.158 ⫺0.078

12

— ⫺0.369†

13



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47.3 and 45.5, respectively). Thus, the physical symptoms of heart failure seem to dominate the experience of the patient but do not necessarily translate to poor mental QOL for either spouse. On average, spouses did not report significant symptoms of depression, whereas patient scores could be characterized as mild depression. The fact that couples did not have significantly different mental QOL, even though only one of them had heart failure, suggests that the disease affects the social roles and psychologic well-being of married couples equally. Although not tested in a heart failure population, this phenomenon has been well documented in patients with other types of cardiovascular disease and their spouses.22–24 Not surprisingly, patients described their physical QOL as significantly worse than their spouses. The physical component score of the SF-12 reflects physical function, role limitations due to physical health problems, bodily pain and general health. The majority of the patients were in NYHA Class III or IV, and the advanced stage of their disease is reflected in the relatively low scores for this QOL scale, as well as in low mean 6-minute walk distance. Because the scores are standardized (with 50 being normal), it is also of interest to note that the spouses had relatively low scores compared with a normative sample, possibly reflecting the physical changes that occur with normal aging. Unfortunately, we did not obtain data about their health status and medical history. However, Karmilovich9 found, in a study of spousal caregiving for individuals with heart failure, that a high percentage of the 11 male and 31 female spouses, who had an average age similar to that in the current study (i.e., 56.7 years), described having medical problems of their own. Almost 33% reported cardiovascular health problems. Others reported health problems, such as diabetes mellitus (17%), arthritis (12%) and stress-related symptoms (10%). Thus, the relatively poor physical QOL described by spouses may have reflected their own health problems, rather than those of their husbands. Left ventricular EF is an important predictor of morbidity and mortality.11 However, many investigators have demonstrated that it bears no significant relationship to HRQOL.3,5,6,25 The current study demonstrates the same lack of relationship and extends the finding to depression. All relationships among EF and NYHA class, 6-minute walk distance and depression were in the anticipated direction. But EF was not significantly related to any of these and therefore cannot be used as a surrogate measure. However, the 6-minute walk distance was significantly related to depression in patients. As

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expected, there was a significant inverse relationship between NYHA class and 6-minute walk distance; namely, as the distance walked decreased, the NYHA class increased. The 6-minute walk distance, not NYHA class, proved to be important in the multiple regression analysis, with the combination of 6-minute walk distance and mental QOL contributing 51% of the variance in patient depression. Several investigators5,26 have demonstrated that the 6-minute walk is highly reproducible and a sensitive measure of change in the functional status of a heart failure patient. It now appears to be related to patient depression as well. One of the most unexpected findings of the current study was that the depressive symptoms and HRQOL experienced by both patients and spouses were unrelated to each other. The depression and HRQOL reported by patients did not predict the depression and HRQOL reported by their spouses, and vice versa. The only predictors of spousal depression were the age of the patient (younger age was related to higher levels of spousal depression) and NYHA class (higher functional status was related to higher levels of depression). Thus, wives did not seem to be affected by the psychosocial status of patients as much as by their own expectations of what they might expect in middle age. Younger age has been correlated with poorer HRQOL in patients with heart failure,27 and it is not surprising that wives of younger patients would have a difficult time adjusting to this functional impairment in younger husbands. As couples age, they come to expect certain negative alterations in health related to the aging process,28 which may reduce the amount of depression they experience as they integrate health loss. The results of this study are limited by the small sample size and the cross-sectional design, which does not allow for any imputation of causality among the variables. Also, all patients and spouses were male– female pairs obtained from a single heart failure center, and therefore these findings may not apply to female patients and their male spouses at different centers. It will be important to compare our findings with future research conducted in female heart failure patients and their male spouses, because gender seems to have an effect on HRQOL.9,15 No interventions of patients with heart failure have yet been tested that systematically include the spouse, and further research with results from such a treatment strategy on patient HRQOL and depression is of great importance. Despite its limitations, the current study is the first to examine the similarities and differences between couples’ depression and HRQOL when one of the pair

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has heart failure. Although the study requires replication in different settings and with more heterogeneous samples, several preliminary recommendations can be made for clinical practice. First, the physical QOL of life of patients is clearly disrupted by heart failure. Clinical interventions should be targeted to improving functional status by encouraging patients to engage in physical activity and regular exercise whenever possible. Spouses can be included in such planning, because they are important supports in helping patients maintain exercise regimens. Spouses can be taught ways to support patient choices that lead to greater physical activity, such as providing simple but concrete guidelines on how to exercise by performing activities of daily living. Second, the differences between patients and spouses documented in the current study suggest that the clinician must look beyond the dyad when educating and counseling about heart failure. Clinicians may seek to develop strategies that focus on the individual as well as the couple, and work to enhance communication between patients and their spouses. Although couples face common issues related to lifestyle changes, physical challenges and future uncertainties that support a common approach, they also have unique responses that need to be acknowledged and supported by nurses and physicians. REFERENCES 1. Grady KL. Quality of life in patients with chronic heart failure. Crit Care Nurs Clin N Am 1993;5:661–70. 2. Berry C, McMurray J. A review of quality-of-life evaluations in patients with congestive heart failure. Pharmacoeconomics 1999;16:247–71. 3. Gorkin L, Norvell NK, Rosen RC, et al. Assessment of quality of life as observed from the baseline data of the Studies of Left Ventricular Dysfunction (SOLVD) trial quality-of-life substudy. Am J Cardiol 1993;12:1069–73. 4. Rogers WJ, Johnstone DE, Yusuf S, et al. Quality of life among 5,025 patients with left ventricular dysfunction randomized between placebo and enalapril: the studies of left ventricular dysfunction. J Am Coll Cardiol 1994;23:393–400. 5. Dracup K, Walden JA, Stevenson LW, Brecht M-L. Quality of life in patients with advanced heart failure. J Heart Lung Transplant 1992;11:273–9. 6. Grady KL, Jalowiec A, White-Williams C, et al. Predictors of quality of life in patients with advanced heart failure awaiting transplantation. J Heart Lung Transplant 1995;14:2–10. 7. Walden JA, Stevenson LW, Dracup K, et al. Extended comparison of quality of life between stable heart failure patients and heart transplant recipients. J Heart Lung Transplant 1994;13: 1109 –18. 8. Jaarsma T, Halfens R, Huijer Abu-Saad H, Dracup K, Stappers J, Van Ree J. Quality of life in older patients with systolic and diastolic heart failure. Eur Heart J 1999;1:151–60.

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