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(Stroke. 2005;36:803.)
© 2005 American Heart Association, Inc.
Original Contributions |
From the Department of Clinical Neuroscience, Division of Neurology, University Hospital, Lund, Sweden.
Correspondence to Ann-C. Jönsson, Department of Clinical Neuroscience, Division of Neurology, University Hospital, S-221 85 Lund, Sweden. E-mail ann-cathrin.jonsson{at}skane.se
| Abstract |
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Methods QOL of 304 consecutive stroke patients and their 234 informal caregivers from the population-based Lund Stroke Register was assessed 4 months after stroke onset with the Short Form 36 (SF-36) questionnaire. SF-36 was repeated for both groups after 16 months together with Mini Mental State Examination (MMSE) and Geriatric Depression Scale (GDS-20) for patients.
Results The patients mean QOL scores improved between 4 and 16 months after stroke in the socio-emotional and mental SF-36 domains and decreased in the domain physical function. Multivariate analyses showed that the patients most important determinants of QOL after 16 months were GDS-20 score, functional status, age, and gender. Informal caregivers had better QOL than patients except for the domain role emotional and the mental component summary. The caregivers most important determinants of QOL were their own age and the patients functional status.
Conclusions Our study highlights depressive symptoms in determining QOL of stroke patients. Despite self-perceived deterioration in physical function over time, several other components of QOL improved, suggesting internal adaptation to changes in their life situations. Informal caregivers of stroke patients may be under considerable strain as suggested by their lower emotionalmental scores.
Key Words: caregivers depression disability evaluation quality of life stroke outcome
| Introduction |
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The objectives of our study were to assess and compare QOL of a population-based group of patients and their informal caregivers 4 and 16 months after stroke and to analyze determinants affecting different domains of their QOL. Our hypothesis was that informal caregivers would have better QOL than patients at both follow-ups, and that changes, if any, would be associated with the patients status.
| Materials and Methods |
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Informal caregivers were considered eligible if they were in contact with the patient at least twice per week. The group "caregivers" consisted of the following categories: spouses or living together with the patient 71%, children 22%, parents or siblings 5%, and close friends 2%.
Informed consent was obtained from each participant. When patients were confused or had sensory dysphasia, the caregivers gave consent on their behalf, if they thought this was in line with the patients will. The study was approved by the Ethics Committee of the Faculty of Medicine, Lund University.
All surviving patients were contacted 4 (follow-up I) and 16 months (follow-up II; median) after stroke onset and given an appointment with a nurse specialist and a physical therapist. Approximately 70% of the 304 patients alive at follow-up II were able to come to the outpatient clinic, whereas the remainder were examined in primary care centers (
10%), nursing homes (
10%), or their own homes (
10%).
Assessments
QOL for patients and caregivers was assessed using the SF-36 questionnaire, which has been validated for use in stroke patients5 and evaluated in a Swedish version.13 SF-36 provides a general assessment of the respondents subjective views on different aspects of life.14 It consists of 8 health domains, each with a score range between 0 and 100, with 100 being the best possible score: physical functioning (PF); role limitations because of physical problems (RP); bodily pain (BP); general health (GH); vitality (VT); social functioning (SF); role limitations because of emotional problems (RE); and mental health (MH). We also analyzed 2 summary scores of SF-36, the Physical Component Summary (PCS) and Mental Component Summary scores (MCS).15 The investigators read the questions with the patients and the caregivers separately, unless they wanted to complete the questionnaires on their own. The questionnaires were checked for missing items and supplemented when necessary. Caregivers or personnel assisted 27 patients at follow-up I and 36 patients at follow-up II. To find determinants of QOL, we also used the following instruments, which have been found suitable in previous studies. Patients functional status was assessed with Barthel Index (BI)16 and divided into 3 grades of dependency17 (Table 1). We assessed functional status before stroke onset using items from the Swedish National Quality Register for Stroke Care18 corresponding to BI questions about dressing, toilet use, transfer, and mobility.
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Social participation was assessed using a 10-item question, with 10 being the best possible score (1 point each given for: attendance at study circle, club/association, theater/cinema, exhibition, religious activity, sports activity/game, family gathering, private party, writing letters/e-mails, or any other activity).19
At follow-up II, we tested cognitive function in 275 patients (29 patients could not respond because of severe cognitive dysfunction or impaired vision) using the Mini Mental State Examination (MMSE), range 0 to 30,20 with a score <24 indicating cognitive impairment.21,22
The presence of depression was tested at follow-up II in 294 patients (10 patients could not respond because of cognitive dysfunction) with the Swedish adapted Geriatric Depression Scale (GDS-20), range 0 to 20. A score of
6 indicates possible depression.2224
Statistical Analysis
Mean scores of the SF-36 domains and the PCS and MCS summary scores were calculated for patients and caregivers. We tested for significant changes between the 2 follow-ups for patients and caregivers separately and compared the scores of patients and caregivers with Wilcoxon Signed Ranks tests. Multivariate analyses (stepwise linear regression analyses) examined if the separate SF-36 domains and summary scores for patients and caregivers were influenced by age or gender. The following items regarding patients only were also included in multivariate analyses for both groups: BI score; MMSE score; GDS-20 score; and social participation. Thus, nonresponders to GDS-20 and/or MMSE (n=30) were excluded.
If the caregivers at follow-up II had any item with lower SF-36 score compared with the patients, we examined if this SF-36 item varied significantly between the 3 grades of dependency using KruskalWallis test. We used the SPSS program for statistical analyses.
| Results |
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QOL and BI at Follow-up II
We found a decrease in patients PF (P=0.017) and increases in SF (P=0.005), RE (P=0.012), MH (P=0.010), and MCS (P=0.001) compared with follow-up I. For caregivers, there were no significant changes between the 2 assessments. At follow-up II, the caregivers had higher mean scores than patients in 5 SF-36 domains and PCS (Table 3).
The caregivers had lower RE and MCS scores than the patients (Table 3). The caregivers mean scores for these 2 items were as follows for the 3 grades of dependency: independency, RE 76.9 and MCS 49.2; moderate dependency, RE 59.8 and MCS 44.8; and major dependency, RE 66.7 and MCS 44.2. Thus, the lowest mean RE score for caregivers was in the moderate dependency group and the highest mean scores for both RE and MCS were in the independent group. KruskalWallis test showed significant differences between the caregivers RE (P=0.030) and MCS (P=0.014) scores in the 3 dependency groups. The patients grade of dependency is stated in Table 1.
MMSE and GDS-20
Fifty patients (18%) scored <24 points on the MMSE scale, indicating possible cognitive dysfunction. On the GDS-20 scale, 119 patients (41%) scored
6 points, indicating possible depression. The proportion of patients with depression was larger in women (45% of 119 women) than in men (37% of 175 men) (P=0.016). This gender difference remained significant (P=0.012) after adjustment for age.
Determinants of QOL
For patients, lower (ie, better) depression scores were associated with higher scores in all SF-36 domains and summary scores; BI influenced physical and social domains and also general health and mental score. Increasing age in patients was related to lower scores in physical domains and higher emotional and mental scores. Female gender in patients was associated with higher scores for physical role, emotional function, general health, and mental score. Higher social participation was associated with better physical function and vitality (Table 4).
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Increasing age in caregivers was negatively related to their physical and emotional domains, general health, and bodily pain. Caregivers social and mental domains, and also bodily pain, were positively affected by better functional status in patients. Patients higher scores in social participation were associated with caregivers higher scores in physical domains. Caregivers social function and vitality were negatively influenced by patients increasing age. Female gender in patients was positively associated with vitality and mental health in caregivers.
| Discussion |
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An association between depression and QOL has been reported previously.3,4,7 In a recent report,8 depression also was a significant factor 2 years after stroke. The conclusion was that interventions targeting mood might improve QOL regardless of physical disability.
Not less than 91% of the men and 80% of the women were living in their own homes at follow-up II. This gender difference was in line with 72% men versus 62% women still being independent (BI), and also with other studies.3,18 A complete BI assessment regarding the prestroke status for comparison with follow-ups would have been useful. However, using questions from the Swedish National Quality Register for Stroke Care, we could compare the patients functional status before stroke and afterward (Table 1). Although the patients self-perceived physical function deteriorated, their QOL improved in social, emotional, and mental domains, which may relate to an adaptation to the new life situation. Such a "response shift" or internal adaptation was also reported in a previous study25 and may represent changing priorities in life.9
We found significant differences between the caregivers emotional and mental scores in the patients 3 dependency groups, which may reflect the severity of the caregiver strain.10 Whereas the patients gradually adapt to the new situation, it may become more demanding for caregivers. Emotional scores were higher for caregivers of patients with major dependency compared with the moderate dependency group, which may be because of more support provided from the community for patients with severe strokes.
| Methodological Aspects |
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Weaknesses include lack of a detailed assessment of depression, as well as absence of data on cerebrovascular or other main new events, and the use of antidepressant medication during follow-up. For depression, we used only the GDS-20, which is a screening scale. Of the 304 patients in our study, only 19 had ICH and 13 had SAH; therefore, the statistical power was too low for analyses of these subgroups. The clinimetric validity of SF-36 has been subject to debate.27,28 Using the recommendation by Taft,29 we included both subscales and summary scores in our study. Because our study also comprised assessments of QOL in caregivers, a stroke-specific scale like the recommended Stroke Impact Scale30 could not be used.
| Conclusions |
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| Acknowledgments |
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Received November 24, 2004; revision received December 22, 2004; accepted January 5, 2005.
| References |
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