IMPROVING THE QUALITY OF LIFE (QOL) of stroke

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1 1541 Domains and Determinants of Quality of Life After Stroke Caused by Brain Infarction Marja-Liisa Kauhanen, MD, PhD, Juha T. Korpelainen, MD, PhD, Pirkko Hiltunen, MD, PhD, Pentti Nieminen, MSc, PhD, Kyösti A. Sotaniemi, MD, PhD, Vilho V. Myllylä, MD, PhD ABSTRACT. Kauhanen M-L, Korpelainen JT, Hiltunen P, Nieminen P, Sotaniemi KA, Myllylä VV. Domains and determinants of quality of life after stroke caused by brain infarction. Arch Phys Med Rehabil 2000;81: From the Departments of Neurology (Kauhanen, Korpelainen, Sotaniemi, Myllylä) and Psychiatry (Hiltunen) and the Medical Informatics Group (Nieminen), University of Oulu; and Department of Rehabilitation, Deaconess Institute of Oulu (Kauhanen), Oulu, Finland. Accepted in revised form February 14, Supported by the Uulo Arhio Foundation and Oulu University Hospital. No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors or upon any organization with which the authors are associated. Reprint requests to Marja-Liisa Kauhanen, MD, PhD, Dept of Rehabilitation, Deaconess Institute of Oulu, Isokatu 63, FIN-90120, Oulu, Finland, marja-liisa.kauhanen@fimnet.fi /00/ $3.00/0 doi: /apmr Objective: To evaluate the domain-specific quality of life (QOL), including physical, social and role functioning, mental health, vitality, bodily pain, and general health domains, and to assess QOL s clinical and sociodemographic correlates in patients who were disabled by ischemic stroke. Design: One-year prospective study of an inception cohort of patients with first-ever brain infarction. Setting: Stroke unit of a neurologic department of a university hospital. Patients: Eighty-five consecutive patients (36 women, 49 men; mean age SD, yr) with first-ever stroke of a mild to moderate nature caused by brain infarction. Main Outcome Measures: Patients were examined at 3 and 12 months poststroke. QOL was measured using the RAND 36-Item Health Survey. The variables studied were lateralization of cerebral lesion, neurologic and functional status, depression, age, gender, marital status, and living conditions. Depression was evaluated according to the criteria of Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition. Neurologic impairment was assessed by Scandinavian Stroke Scale, performance in activities of daily living by the Barthel index, and the intellectual deterioration by the Mini- Mental State Examination. Results: QOL was poorer for the patients with mild to moderate stroke impairments at 3 months poststroke. The test domains most prone to being affected were physical functioning, physical role limitations, vitality, and general health. Only the domains of physical functioning and physical role limitations improved during the follow-up at 1 year. Depression, although mostly minor, was the most important reason for impaired QOL. Depression, being married, and age emerged as significant independent contributors to the low score value of vitality. Depression and being married were related to the low score value of physical role limitations. Conclusions: Stroke affects QOL, impairing its physical and psychosocial domains. The most important determinants of low QOL seem to be depression and being married. These findings provide new challenges for stroke rehabilitation, calling for identification of patients and spouses in need of supportive services. Key Words: Brain infarction; Quality of life; Rehabilitation by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation IMPROVING THE QUALITY OF LIFE (QOL) of stroke patients has received increasing attention in the development of therapeutic strategies. 1 QOL has been defined with various modalities, eg, health-related subjective experiences, life satisfaction, and subjective well-being, with the latter focusing more on emotions. However, there is broad consensus that assessment of QOL should include aspects of physical, psychologic, functional, social, and general health. 2,3 Some researchers suggest that impairment of QOL after stroke is caused by depression 4,5 and functional impairment 4,6 ; other research suggests different causes. 7,8 Women tend to report poorer health and QOL in the general population, 9 but knowledge of the impact of gender and marital status on poststroke QOL is limited. Often, assessment of QOL has not been based on standardized measures, 6,10 and prospective studies of poststroke QOL are scarce Diagnosis of depression has seldom been based on psychiatric evaluation. 12 Interpretation of QOL findings can also be complicated because of the wide variation in time elapsed after the onset of stroke, 7 as well as because of the simultaneous grading of pre- and poststroke QOL, 6,7,10 which may lead to overestimation of the prestroke condition. To avoid the deficiencies of the previous studies, we used standardized QOL and outcome measures prospectively during the first year poststroke. Diagnosis of depression was based on psychiatric examination performed by the same psychiatrist experienced with psychiatric disorders in stroke. Our study sought to investigate the domain-specific QOL, including physical, social and role functioning, mental health, vitality, bodily pain, and general health domains, during the first year poststroke caused by brain infarction. Moreover, its purpose was to evaluate clinical and sociodemographic correlates of QOL to improve life satisfaction of stroke patients and their spouses. METHODS The original study sample consisted of all the patients (106 subjects with first-ever brain infarction) consecutively admitted to the stroke unit of a neurologic department of a university hospital. Patients with transient ischemic attack, markedly decreased levels of consciousness, previous psychiatric illnesses, central nervous system disorders, or alcoholism were excluded. Two patients died before the 3-month follow-up visit, and 3 others died before the 12-month visit. Three patients declined examinations at 3 months, and 6 more at 12 months poststroke. Sixteen patients with communicative disorders, who were unable to complete questionnaires, were also excluded. Thus, 85 (36 women, 49 men; mean age standard deviation, 65

2 1542 QUALITY OF LIFE AFTER STROKE, Kauhanen 12.5yr; range, 19 82yr) of the initial 106 patients at 3 months and 76 at 12 months poststroke were included on the study. Sixty-eight (80%) of the patients had clinical signs attributable to a hemispheric brain infarction, 34 (50%) in the dominant and nondominant hemispheres. Sixteen (19%) patients had neurologic deficits of brainstem infarction and 1 (1%) patient of cerebellar infarction. Computed tomography or magnetic resonance imaging of the brain was performed on all patients on admission to exclude lesions other than infarction. All patients were investigated clinically in the acute phase and at 3 and 12 months poststroke. Neurologic impairment was assessed using the Scandinavian Stroke Scale (SSS), 13 and performance in the activities of daily living (ADLs) using the Barthel index (BI). 14 The degree of handicap was scored with the Rankin scale, 15 and the intellectual deterioration by the Mini-Mental State Examination (MMSE). 16 The SSS, BI, Rankin scale, and MMSE are widely used outcome measures in stroke, and their validity and reliability are well defined A psychiatric examination was performed at the 3-month and 12-month follow-up visits. Depression was evaluated according to the criteria of the Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition, (DSM-III-R) 23 and graded as absent, minor, or major. In the diagnosis of dysthymic depression, the 2-year criterion of DSM-III-R classification was ignored. Thus, when patients symptoms had lasted for less than 2 years but otherwise fulfilled the criterion of dysthymic disorder, the operatively defined term minor depression was used. Interviews were performed by the same psychiatrist experienced with psychiatric disorders in stroke and other somatic disorders, always at the same time of the day. Most of the patients had mild to moderate deficits of brain infarction (table 1). Minor depression was diagnosed in 34 (40%) patients and major depression in 7 (8%) patients at 3 months poststroke. At the 12-month visit, 20 (26%) patients showed minor and 8 (11%) patients major depression. Fifty-nine (69%) of the patients were married (or cohabiting), and 26 (31%) were single, divorced, or widowed. In the acute phase, 18 (21%) patients; at 3 months, 15 (18%) patients; and at 12 months, 14 (18%) patients were living alone. The Finnish version of the RAND 36-Item Health Survey 1.0 (RAND-36) 24,25 was used to measure QOL. The questionnaire was administered by a personal interview when appropriate. RAND-36 comprises 8 separate dimensions: physical functioning, role limitations due to physical problems (role limitations physical), mental health, role limitations due to emotional problems (role limitations emotional), vitality, social functioning, bodily pain, and general health. Scores for subscales range from 0 to 100, with higher scores indicating a better health state. The instrument contains the same questions as the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) scale, 3 but the scoring for the general health and bodily pain subscales differs slightly. SF-36 is a widely used generic method for measuring QOL, and its validity and reliability in stroke has been confirmed. 4,26 Statistical Analysis Statistical analysis was performed by SPSS a statistical analysis program. The Kruskal-Wallis test was used to compare RAND-36 subscales in different depression groups, and the Mann-Whitney test to compare the scores of the subscales according to gender, age groups, marital status, and living conditions. Wilcoxon s matched pairs test was used to compare the scores of the SSS, BI, Rankin scale, and MMSE in the acute phase and at 3 and 12 months poststroke and the scores of the RAND-36 subscales at 3 months and 12 months poststroke because of skewed distribution of the scores. In cross-tabulations, chi-square analysis or, when appropriate, Fisher s exact test was used to calculate the statistical significances between the groups. Logistic regression 27 was used to discover which variables best describe and discriminate between the patients with low and high scores on the RAND-36 subscales. To identify the best discriminating factors, the logistic regression models were fitted with a stepwise procedure. The final models were reported using adjusted odds ratios (ORs) and their 95% confidence intervals. For the cross-tabulation and logistic regression analysis, the continuous variables were dichotomized as follows. A cutoff point of 65 years or greater, 65 being the mean age of the study sample, was used for age. The domains of RAND-36 were dichotomized into low and high according to age- and sexspecific reference values of the Finnish population, 25 using the mean as a cutoff point. The BI was dichotomized into patients independent (BI 85) and dependent (BI 85) in ADLs. 28 The cutoff point of 52 or greater was used in the SSS for mild to moderate symptoms, 29 and of 24 or greater in the MMSE for patients without cognitive impairment. 16 The Rankin scale was dichotomized into patients with a good outcome (grades I, II) and those with moderate or poor outcome (grades III V). 29 The ethics committee of the local medical faculty approved the protocol of the study, which was performed in accordance with the principles of the Declaration of Helsinki. Informed consent was obtained from each subject participating in the study. RESULTS All the dimensions of QOL, except mental health scale of RAND-36, were found to be low in the patients with mild to moderate consequences of stroke at 3 months poststroke (table 2). When compared with age- and sex-specific reference values of the general population, 25 the test domains most often impaired were physical functioning, role limitations physical, vitality, and general health. Only the domains physical functioning and role limitations physical improved between 3 and 12 months poststroke. Table 1: Median Scores of the SSS, BI, Rankin Scale, and MMSE in the Acute Phase and at 3 and 12 Months Poststroke Acute Phase (n 85) 3 Months (n 85) 12 Months (n 76) Median (95% CI) Range Median (95% CI) Range Median (95% CI) Range SSS 47 (44 50) (18 58) 56 (54 57) (26 58)* 58 (54 58) (26 58)* BI 75 (60 85) (5 100) 100 ( ) (20 100)* 100 ( ) (30 100)* Rankin 4 (3 4) (1 5) 2 (2 2) (1 5)* 2 (1 2) (1 4)* MMSE 26 (24 27) (16 30) 27 (27 28) (17 30)* 28 (27 29) (18 30)* * p.001 comparing the scores in the acute phase with those at 3 and 12 months poststroke using Wilcoxon s matched pairs test.

3 QUALITY OF LIFE AFTER STROKE, Kauhanen 1543 Table 2: Scores for RAND-36 Subscales of the Patients at 3 and 12 Months Poststroke and the General Finnish Population 25 3 Months (n 85) 12 Months (n 76) General Population Physical functioning * Role limitations physical * Mental health Role limitations emotional Vitality Social functioning Bodily pain General health Values of the patients are means SD. * p.05 comparing the scores at 3 months with those at 12 months poststroke by Wilcoxon s matched pairs test. Depression correlated significantly with various dimensions of QOL both at 3 and 12 months poststroke (fig 1). Table 3 shows the unadjusted scores for RAND-36 subscales according to age and gender at 12 months poststroke. There was a statistically significant difference (p.045) between the patients aged younger than 65 years and 65 years and older only in the vitality subscale; when compared with age- and sexspecific reference values of the general population, 25 a significant impairment for older age was found on the mental health subscale (p.046) and slight impairment on the vitality subscale (p.065) at 12 months poststroke (table 4). There were no statistically significant differences in the scores of the subscales between women and men, but when comparisons were made with the reference values, 25 men at 12 months poststroke had a poorer outcome as measured by role limitations physical (p.039) and vitality (p.019) (table 4). Being married correlated significantly with low scores on the role limitations physical (p.043), vitality, (p.005), and role limitations emotional subscales (p.010) 1-year poststroke (table 4). When comparing the married patients with those who were not married but living with the family, married patients had poorer outcome in the domains of mental health (p.019) and general health (p.021) (table 5). There were no statistically significant differences in the domains of QOL between married men and women or between married men and unmarried men. The SSS correlated only with the physical functioning (p.001) and role limitations physical (p.002) subscales at 3 and 12 months, and the BI with the physical functioning (p.016) and the social functioning (p.036) subscales at 3 months poststroke. The Rankin scale was a function of physical functioning (p.001) and role limitations physical (p.002) at 3 and 12 months poststroke, and of general health (p.022) at 3 months poststroke. There was no significant correlation between the RAND-36 subscales and lateralization of the hemispheric lesion, cognitive impairment measured by the MMSE, or living conditions. The main domains that were affected, role limitations physical and vitality, were selected for stepwise logistic regression analysis. That analysis showed that depression and being married were the most important variables when discriminating between the low and the high scores of role limitations physical (table 6). Low vitality was related to being married, depression, and old age. DISCUSSION When assessed with RAND-36, the domain-specific QOL was clearly impaired in the patients with mild to moderate deficits of brain infarction. Depression, although mostly minor, was associated with impairment of various dimensions of QOL. The results also showed that depression and being married were the most important determinants of impaired role limitations physical, and being married, depressed, and old impaired vitality. Low scores on the various subscales of RAND-36 were observed in the patients at 3 months; the domains most often impaired were physical functioning, role limitations physical, vitality, and general health, supporting the results of an earlier Fig 1. Median RAND-36 score profiles for patients without depression and with minor or major depression at12 months poststroke. p values show the difference among the depression groups evaluated by the Kruskal-Wallis several independentsamples test. (ƒ), no depression; ( ), minor depression; (E), major depression.

4 1544 QUALITY OF LIFE AFTER STROKE, Kauhanen Table 3: Unadjusted Scores for RAND-36 Subscales of the Patients According to Age and Gender at 12 Months Poststroke Age (yr) Gender 65 (n 28) 65 (n 48) Women (n 30) Men (n 46) Physical functioning 60.6 ( ) 44.8 ( ) 52.8 ( ) 49.2 ( ) Role limitations physical 43.8 ( ) 33.3 ( ) 47.5 ( ) 30.4 ( ) Mental health 80.0 ( ) 72.5 ( ) 79.5 ( ) 72.5 ( ) Role limitations emotional 61.9 ( ) 71.5 ( ) 73.3 ( ) 64.5 ( ) Vitality 61.8 ( ) 52.1 ( ) 57.7 ( ) 54.4 ( ) Social functioning 84.8 ( ) 74.1 ( ) 82.5 ( ) 75.2 ( ) Bodily pain 74.7 ( ) 69.5 ( ) 71.3 ( ) 71.5 ( ) General health 60.0 ( ) 53.4 ( ) 57.5 ( ) 54.7 ( ) Values are means (95% confidence interval). study 4 using the SF-36 as a measure of QOL. In a more recent study, 30 patients with only mild disorders of stroke had lower QOL than the control group, contrary to another report 5 in which patients were coping well with their stroke-related impairments. In our study, QOL did not improve during the 1-year follow-up, although neurologic impairment and functional ability did. This correlates with a study 10 using visual analog scales to measure QOL, but contrasts with another study 12 in which QOL improved between 3 and 12 months poststroke. The improvement documented in the latter study may be caused by recovery from major depression. Vitality was more strongly associated with depression than in another study using SF-36, 4 which may reflect some cultural differences in health concepts. 25 Other studies have found an association between depression and QOL, 5,6,10,12,31 but only 1 of them 12 used a psychiatric examination for diagnosing poststroke depression. In a study of long-term survivors of stroke, 7 depression was associated only with low satisfaction with leisure time activities. Although our patients had mainly mild disorders, it seems that they were unable to cope with the stressful events entailing stroke. Neurologic impairment and dependency in ADLs correlated only with the physical or social functioning subscale scores, a finding that contrasts with another study 4 using SF-36. The correlation among neurologic impairment, dependency in ADLs, and QOL seems to have been contradictory, with some findings showing a strong association among them 6,7,10,32 and others, a weak correlation. 5,8 In our study, only a few patients had severe neurologic impairment or dependency in ADLs, which may have influenced the subjective evaluations. Cognitive impairment did not correlate with the domains of QOL, which is contrary to previous reports 6,33 that restored cognitive ability was associated with better life satisfaction. The correlation between age and QOL has remained obscure. 7,8,11,12 In our study, advanced age was associated with low scores on the mental health and vitality subscales. In the stepwise logistic regression analysis, age older than 65 years was an independent explanatory factor for impaired vitality (OR 4.1). Because vitality reflects the psychologic health dimension more than the physical one in the Finnish population, 25 our findings support other studies, in which depression 29,34 is shown to be associated with increasing age. Women have been reported 4 to have higher SF-36 scores than men on the mental health and social functioning subscales, which contrasts with our findings that no significant gender differences exist in the domains of QOL. However, when compared with the reference values of the general population, men had a poorer poststroke outcome than women as measured by the role limitations physical and vitality scales. Most in- Table 4: Frequency Distributions at 12 Months Poststroke of the Most Important RAND-36 Subscales Affected by Depression and Sociodemographic Variables Role Limitations Physical General Health Vitality Low High Low High Low High Depression No 26 (54) 22 (46) 18 (38) 30 (62) 21 (44) 27 (56) Yes 25 (89) 3 (11) 22 (79) 6 (21) 22 (79) 6 (21) p.002 p.001 p.003 Age (yr) (64) 10 (36) 16 (57) 12 (43) 12 (43) 16 (57) (69) 15 (31) 24 (50) 24 (50) 31 (65) 17 (35) p.689 p.547 p.065 Gender Women 16 (53) 14 (47) 13 (43) 17 (57) 12 (40) 18 (60) Men 35 (76) 11 (24) 27 (59) 19 (41) 31 (67) 15 (33) p.039 p.190 p.019 Marital status Single/widow 11 (50) 11 (50) 8 (36) 14 (64) 7 (32) 15 (68) Married 40 (74) 14 (26) 32 (59) 22 (41) 36 (67) 18 (33) p.043 p.070 p.005 Statistical significances between groups were evaluated by chi-square test.

5 QUALITY OF LIFE AFTER STROKE, Kauhanen 1545 Table 5: Frequency Distributions of the RAND-36 Subscales in Married and Single/Widowed Patients Living With a Companion at 12 Months Poststroke Low Married High Single/Widow Low High Physical functioning 31 (60) 21 (40) 7 (70) 3 (30).537 Role limitations physical 38 (73) 14 (27) 4 (40) 6 (60).040 Mental health 26 (50) 26 (50) 1 (10) 9 (90).019 Role limitations emotional 27 (52) 25 (48) 1 (10) 9 (90).015 Vitality 35 (67) 17 (33) 2 (20) 8 (80).005 Social functioning 27 (52) 25 (48) 2 (20) 8 (80).064 Bodily pain 21 (40) 31 (60) 4 (40) 6 (60).982 General health 31 (60) 21 (40) 2 (20) 8 (80).021 Statistical significances between groups were evaluated by chisquare test. vestigators have reported QOL to be either independent of gender 10,33 or lower in women. 31,32 Married stroke patients had low scores on the role limitations (physical, emotional) and vitality subscales. When comparing married patients with unmarried patients living with the family, married patients also showed poorer outcome in the mental health and general health dimensions of QOL; conversely, unmarried patients coped well with their impairments. The stepwise logistic regression analysis showed that being married was the most essential variable for probability of low vitality (OR 11.1) and, with depression, for role limitations physical (OR 4.1). High levels of social support have been associated with better outcome. 8,29,35 Our finding, although seemingly paradoxical, is nonetheless understandable. First, spouses may underestimate the need for support of patients with only mild stroke disorders, as suggested in another study. 35 Second, stroke may lead to changes in the interaction between spouses and in family roles, 36,37 and spouses may react by being overprotective and overcaring. 37 It is also likely that unmarried patients are subjected to a more manifold support regimen than the married ones, whose spouses are given much of the responsibility for the patients well-being. Finally, the willingness and ability of caregivers to support stroke patients appear to have a Table 6: The Most Essential Variables for Probability of Low Role Limitations Physical and Vitality Subscale Scores Using Logistic Regression Analysis at 12 Months Poststroke Variable Role Limitations Physical Odds Ratio 95% CI p Value Odds to Remove* Ratio Vitality 95% CI p p Value to Remove* Depression No 1 1 Yes Age (yr) Marital status Single/ 1 1 widow Married Abbreviation: CI, confidence interval. * The p value shows the difference of deviance test to confirm the variable as an appropriate factor affecting the low role limitations physical or vitality scores. Other variables considered (lateralization of lesion, MMSE, living conditions) did not change or improve these models. significant influence on a patient s emotional reactions and on the success of rehabilitation. 35,37 Moreover, stroke also causes distress to the caregivers of the survivors In addition to physical deficits, problems related to cognitive and behavioral disturbances, emotional illness, marital disharmony, and feelings of being primarily responsible may be sources of major burden to the caregivers All these aspects suggest that stroke patients and their spouses need more individually tailored, continuous, and coordinated information; counseling; and support that goes beyond standard approaches. Rehabilitative approaches encouraging the patient s return to society and new contacts with other people may reduce the risk for depression in stroke victims and their caregivers and thus improve their QOL. We believe our findings provide useful new information, although the study sample was somewhat limited because of exclusion of patients with severe cognitive and language deficits. Moreover, we had no control group, but it was possible to compare the findings with the normative data of healthy persons. CONCLUSION Poststroke depression has a clear-cut negative impact on QOL, even in patients with mild to moderate deficits of stroke. This deterioration embracing most domains of QOL begins in the first months after stroke and does not improve during the first year. In addition to depression, being married seems to carry a risk for low QOL in poststroke patients in our present rehabilitation setting. These findings call for individually tailored, multidimensional rehabilitative approaches and support services provided by health care professionals and familial caregivers to improve QOL poststroke. References 1. Hachinski V. Post-stroke depression, not to be underestimated. Commentary. 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