Determinants of quality of life in Brazilian stroke survivors

Journal of the Neurological Sciences 284 (2009) 63–68

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Journal of the Neurological Sciences j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / j n s

Determinants of quality of life in Brazilian stroke survivors Francisco Javier Carod-Artal ⁎, Daniele Stieven Trizotto, Luciane Ferreira Coral, Clarissa Menezes Moreira Department of Neurology, The Sarah Network of Rehabilitation Hospitals, Sarah Hospital, Brasilia DF, Brazil

a r t i c l e

i n f o

Article history: Received 7 October 2008 Received in revised form 31 March 2009 Accepted 8 April 2009 Available online 2 May 2009 Keywords: Depression Disability Health related quality of life Stroke Stroke outcome

a b s t r a c t Objective: To identify the main determinants of health-related quality of life (HRQoL) in Brazilian stroke survivors. Methods: Patients were assessed with the NIH Stroke Scale, Barthel index (BI), Lawton scale, modified-Rankin scale, Cumulative Illness Rating Scale for Geriatrics, Mini-Mental State Examination, Hospital Anxiety and Depression Scale, and Stroke Impact Scale (SIS) 3.0. Results: 260 stroke survivors were assessed (mean age: 55.9 years; 55.2% males). Eighty-eight per cent of patients had an ischemic infarction. Approximately one third (31.5%) had a BI score ≤ 60 (severe disability), and 34.5% were independent in the activities of daily living. Prevalence of post-stroke depression was significantly higher in females than in males (25% vs 15.4%; p = 0.05). Post-stroke depression was associated with female sex, disability, and lower cognitive functioning (p b 0.001). SIS Physical Composite Domain mean score was 46.6. Hand Function (26.5), Strength (47.6), Mobility (50.1), Social participation (50.6), and Emotion (52.2) were the most affected domains. HRQoL of stroke survivors decreased in a significant way as motor impairment severity, disability, functional status and mood worsened (ANOVA, p b 0.0001). Motor impairment, disability, and mood disturbances were independent predictors of HRQoL in the multivariate regression analysis. Conclusions: Post-stroke depression and disability are consistent determinants of HRQoL in Brazilian stroke patients. © 2009 Elsevier B.V. All rights reserved.

1. Introduction Subjective well-being and health related quality of life (HRQoL) are patient-centered outcomes that are being increasingly incorporated in healthcare evaluation in the last decade. Quality of life has been defined as “individual's perceptions of their position in life in the context of the culture and value system in which they live and in relation to their goals, expectations, standards and concerns” [1]. HRQoL is a related concept that refers to a diverse range of patient's perceptions and experiences of disease, which may be of central concern in terms of treatment goals [2]. Stroke is the leading cause of long-term disability in western countries, and the length of time to recovery depends on stroke severity [3]. Prevalence of stroke survivors who required care in at least one activity of daily living (ADL) has been estimated in 173/100 000 [4]. Neurologists are likely to see long-term stroke survivors who are living longer with stroke sequelae due to the increase of their survival and the aging of population. In the social model of stroke, HRQoL is a complex interplay between stroke-related disability, environment, family and social

⁎ Corresponding author. SQS 406 bloco U, apt 206, CEP 70255-210, Brasilia DF, Brazil. Tel.: +55 61 3 319 1555; fax: +55 61 3 319 1538. E-mail addresses: [email protected], [email protected] (F.J. Carod-Artal). 0022-510X/$ – see front matter © 2009 Elsevier B.V. All rights reserved. doi:10.1016/j.jns.2009.04.008

support [2]. Stroke patients commonly suffer from physical role alteration, mood disorders, cognitive impairment and decreased social interaction in the chronic phase of stroke [5–10]. A complex network of factors that may influence individual's adjustment to life after stroke has been described. Age, gender (female), comorbidity (diabetes), disability, mood, coping styles and social support have been reported to be significant predictors of HRQoL in stroke survivors [11–15]. In addition, the burden of the caregivers in the long-term management of stroke patients is substantial [16–20]. Standardized assessment of HRQoL in stroke survivors should be multidimensional, comprising at least several dimensions: physical (i.e., motor impairment, spasticity, ataxia, dysarthria, dysphagia, pain, sleep disturbances and fatigue), functional (mobility, care), mental (coping, mood, cognition) and social (work, social network), and requires a subjective rating by the patient [5]. Nevertheless, results from some studies are conflicting because of the marked heterogeneity of the stroke population and the variability in HRQoL measures, including the use of non-standardized and generic HRQoL scales [2]. Brazil is the largest country in South America with a population of more than 180 million inhabitants. Prevalence and global burden of stroke are expected to rise in the next decades, with the increase in life expectancy and the aging of the population [21]. Nevertheless, there is no data regarding the long-term consequences of stroke and its impact on the HRQoL in Brazilian stroke survivors.

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The objective of this study was to identify the main determinants of HRQoL in a cohort of Brazilian stroke survivors by means of a series of standardized functional and HRQoL measures. We hypothesized that functional status, disability and mood disorders may be important factors associated with a poor HRQoL in stroke survivors. Gender differences might also be expected in the HRQoL of stroke patients. 2. Subjects and methods 2.1. Patients The study included all stroke patients who were consecutively admitted at the outpatient Neurology and Stroke Rehabilitation Clinics of the Sarah Hospital in Brasilia DF, between July 1 2007 and April 30 2008. The Sarah network of Rehabilitation hospitals is a public institution dedicated to treatment and rehabilitation of neurological and orthopedic disorders in Brazil. Stroke was defined as a focal deficit of sudden onset that lasted at least 24 h with no known alternative to a vascular cause [22]. Stroke was confirmed by clinical examination and radiological findings on brain CT and/or MRI. The Oxfordshire classification [23] and the Trial of ORG 10172 in Acute Stroke Treatment (TOAST) criteria [24] were used to define ischemic stroke subtypes. Exclusion criteria were: 1) Patients with transient ischemic attack; 2) patients with subdural haematoma; and 3) patients who were not able to fill out the questionnaires because of severe aphasia or dementia. The study was approved by the Ethics Committee of the Sarah network of Rehabilitation Hospitals. Informed consent was obtained from all the patients. 2.2. Assessments Data were prospectively collected on age, sex, educational level, occupation, marital status, stroke etiology and vascular risk factors. Assessments were made with the following instruments: 1) the National Institute of Health Stroke Scale (NIHSS) [25]; 2) the Barthel index (BI) [26]; 3) the Lawton and Brody instrumental activities of daily living (IADL) scale [27]; 4) the modified version of the Rankin scale (m-RS) [28]; 5) the Cumulative Illness Rating Scale adapted for geriatric population (CIRS-G) [29]; 6) the Folstein's Mini-Mental State Examination (MMSE) [30]; 7) the Hospital Anxiety and Depression Scale (HADS) [31]; and 8) the Stroke Impact Scale (SIS) 3.0 [32]. Functional and HRQoL assessments were performed by trainee neurologists during the visit of the patients to the Stroke Rehabilitation Clinics. All the selected scales were previously adapted and validated to Brazilian population [33–35]. The NIHSS is a 15-item stroke impairment scale, which provides a quantitative measure of key components of a standard neurological examination [25]. The NIHSS assesses level of consciousness, extrinsic ocular movements, visual fields, facial muscle function, arm and leg strength, coordination (limb ataxia), sensory function, language (aphasia), speech (dysarthria), extinction and inattention. The maximum possible score is 42, and higher scores indicate greater impairment. The BI [26] measures 10 personal ADL related to self-care and mobility: control of bowels and bladder, grooming, toilet use, feeding, transfer, mobility, dressing, stairs, and bathing. BI score ranges from 0 to 100 and lower scores indicate greater dependency. The Lawton and Brody scale [27] assesses the following extended or instrumental ADL: using the telephone; getting to places beyond walking distance; grocery shopping; preparing meals; doing housework or handyman work; doing laundry; taking medications; and managing money. Its score ranges from 8 (completely unable to handle instrumental activities) to 24 (without help). The m-RS [27] was used to measure global functional independence. The scale is defined categorically with 7 different grades: 0 (no symptoms); 1 (no significant disability, despite symptoms); 2 (slight

disability; unable to perform all previous activities but able to look after own affairs without assistance); 3 (moderate disability; patient requires some help, but is able to walk without assistance); 4 (moderately severe disability; unable to walk without assistance and unable to attend to own bodily needs without assistance); 5 (severe disability; patient is bedridden, incontinent, and requires constant nursing care and attention); and 6 (dead). Comorbidity was assessed by means of the CIRS-G [29]. The severity of concomitant diseases is the sum score for 14 organ systems. The worst problem in an organ system is rated on a scale from 0 to 4 (0 = none; 4 = extremely severe/immediate treatment required/end organ failure/severe impairment in function). The number of affected organ systems is used as denominator for calculation of the CIRS-G Severity Index. The MMSE [30] was used to assess certain areas of cognitive functioning. The MMSE include the assessment of memory, orientation to place and time, naming, reading, copying (visuospatial orientation), writing, and the ability to follow a three-stage command. The MMSE has 19 items and is scored from 0 to 30 points. The cut-off point for cognitive impairment is 24/23, and lower scores indicate greater cognitive dysfunction. The Brazilian version of the MMSE was used [33]. The HADS [31] was used to assess mood disturbances. The HADS consists of 7 items for assessment of anxiety and 7 for depression, with each item scored from 0 (no problem) to 3 (severe problem). Scores on individual items can be summed to calculate a score for anxiety (HADS-Anxiety) and for depression (HADS-Depression). Scores ≥ 11 points for a subscale are indicative of mood disturbance. The Brazilian version of the HADS was used [34]. HRQoL was evaluated with the Stroke Impact Scale [32]. The SIS 3.0 is a 59-item stroke-specific outcome measure that was developed to assess several physical domains and other dimensions of HRQoL [32]. The SIS has 8 domains: Strength, Hand function, Mobility, Physical and instrumental activities of daily living (ADL/IADL), Memory and thinking, Communication, Emotion and Social participation. Scores for each domain range from 0 to 100, and higher scores indicate better HRQoL. The Strength items are rated in terms of strength; Memory, Communication, ADL/IADL, Mobility and Hand function items are rated in terms of amount of difficulty; Emotion and Social Participation items are rated in terms of frequency. Four of the subscales (Strength, Hand function, ADL/IADL and Mobility) can be combined into a Composite Physical Domain. The SIS 3.0 also includes a question (item 50) to assess the patient's global perception of recovery [35]. The Brazilian version of the SIS was used [36]. Metric properties of the SIS Brazilian version (acceptability, reliability and validity) are adequate. The internal consistency of SIS (Cronbach's alpha = 0.94) and SIS domains (item-dimension correlation, 0.17–0.89) are satisfactory. Adequate convergent validity between SIS domains and NIHSS, m-RS, BI, and SF-36 categories has also been shown [36]. 2.3. Data analysis Unpaired t-test, Mann–Whitney test, Chi-squared, analysis of variance (ANOVA) and Kruskal–Wallis test were conveniently used for comparison between groups. Significance level was established at 0.05. Spearman correlation coefficient (r) was used to evaluate correlation between SIS domain mean scores and other scales. Multiple linear regression analysis (forward stepwise regression) was used to assess the main predictors of HRQoL. Covariates from the univariable analysis with p b 0.1 were included in the multivariable regression analysis. The SIS domains were considered the dependent variables. The combined physical component was also included in the analysis since lack of normality was observed in some SIS domains. The independent variables included in the regression model were age, gender, years of education, time since stroke, neurological impairment (NIHSS mean score), comorbidity (CIRS-G total score), disability (BI

F.J. Carod-Artal et al. / Journal of the Neurological Sciences 284 (2009) 63–68

mean score), cognition (MMSE mean score) and anxiety or depression (as measured by the HADS-Depression or HADS-Anxiety subscales). The significant determinants of HRQoL were tested for collinearity in the regression model. When 2 or more potential factors were highly correlated (r N 0.70), the covariate that was more clinically important was selected for entry in to the model. Statistical Package for the Social Science 13.0 for Windows (SPSS, Chicago, IL) was used for data analysis. 3. Results On the basis of clinical examination, 43 patients with severe aphasia and 27 patients with dementia were excluded. Most of patients who were approached consented to participate and only six patients refused to participate in the study. A total of 260 stroke patients (52.3% males; mean age 55.9 years, SD 14.5; mean time since stroke: 20.7 months, SD: 24.8) participated in the study. Approximately a quarter (22.3%) of stroke patients was less than 45 years old. Mean years of education were 8.4 (SD: 5.5). Approximately half of patients were white (47.7%) or mixed (42.3%), married (53.8%) and retired (45.8%). Vascular risk factors and stroke subtypes are shown in Table 1. Eighty-eight percent of patients had an ischemic infarction and 74.2% had hypertension. The most common ischemic stroke subtypes were PACI (41.2%) and LACI (24.6%). 3.1. Functional status and disability Functional evaluation of stroke patients is shown in Table 2. The median of the m-RS was 3 (interquartile range: 2). Approximately half (47.3%) of patients had a m-RS score ≤ 2, a quarter (23.5%) had a m-RS 3 and 29.3% had a m-RS 4. NIHSS mean score significantly correlated (p b 0.0001) with the level of dependence in the ADL/IADL as measured by BI (r = 0.72) and Lawton scale (r = 0.66), respectively. The median of the BI score was 80 (interquartile range: 40). One third (31.5%) of stroke patients had a BI score ≤ 60 (severe disability), 35% had a BI 65–90 (moderate disability), and 34.5% had a BI 95–100 (independence in the ADL). Approximately a quarter (27.7%) of patients was incontinent or had problems with bladder control, 40%

Table 1 Vascular risk factors and stroke subtypes (n = 260).

Vascular risk factors Hypertension Smoking Hyperlipidemia Diabetes Previous transient ischemic attack Previous stroke Congestive heart failure Atrial fibrillation Ischemic cardiopathy Stroke subtype Hemorrhage Ischemic stroke Oxfordshire classification PACI LACI TACI POCI TOAST classification Small vessel infarction Cryptogenic stroke Large artery occlusion Cardioembolism Other causes

n

%

193 144 91 55 27 25 17 17 16

74.2 55.4 35.0 21.2 10.4 9.6 6.5 6.5 6.2

32 228

12.3 87.7

94 56 45 33

41.2 24.6 19.7 14.5

59 54 46 42 27

25.9 23.8 20.2 18.4 11.8

PACI, partial anterior circulation infarction; TACI, total anterior circulation infarction; LACI, lacunar infarction; POCI, posterior circulation infarction.

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Table 2 Functional evaluation of stroke patients.

National Institute of Health Stroke Scale † Barthel Index ⁎ Lawton Instrumental activities of daily living Scale ⁎ Modified Rankin scale † CIRS-G, total score † CIRS-G, severity index † Mini-mental State Examination ⁎ HADS-Anxiety subscale † HADS-Depression subscale † Stroke Impact Scale ⁎ Strength Hand function ADL/IADL Mobility Memory and thinking Communication Emotion Social participation SIS, Composite Physical Domain ⁎ SIS, patient's global assessment of recovery ⁎

Mean

Standard deviation

6.7 73.4 16.9 2.6 5.5 1.8 26.0 7.5 7.1

3.8 25.9 4.6 1.1 2.3 0.3 3.8 4.1 4.0

47.6 26.5 53.0 50.1 70.8 77.6 52.2 50.6 46.6 56.6

27.9 34.2 25.5 28.5 22.3 22.1 12.4 23.2 24.8 25.1

ADL, Activities of daily living; CIRS-G, Cumulative Illness Rating Scale for Geriatrics; HADS, Hospital anxiety and depression scale; IADL, Instrumental activities of daily living. SIS, Stroke Impact Scale. ⁎, Higher scores indicate better function; †, Higher scores indicate worse function.

were dependent when bathing, and 22.3% were dependent for personal hygiene. LACI patients had a higher BI score than TACI patients (81.2 vs 55.9; p b 0.0001). Lawton scale mean score was 16.9. The level of dependency in extended ADL (Lawton scale) among those patients defined as ‘not dependent’ with the BI was examined. Patients independent in the ADL scored 21.5, patients with BI ≤ 60 scored 12.8, and patients with BI between 65 and 90 scored 16.3 (ANOVA; p b 0.0001). IADL were diminished 50% in patients with severe disability. No significant differences by age, years of education, motor impairment (as measured by NIHSS), disability (as measured by BI and/or Lawton scale) or functional status (as measured by m-RS) were observed among males and females. CIRS-G Severity Index (1.8± 0.3) resulted similar for both men and women. The mean number of affected organ systems was 3.1. Although the frequency of comorbid conditions was similar across m-RS stages, the CIRG-S Severity Index score increased as functional status worsened (from 1.7 at m-RS 1 to 1.9 at m-RS 4; p = 0.01). Age was moderately correlated with the level of dependence in the ADL (BI; r = − 0.20; p = 0.001) and IADL (Lawton scale; r = −0.21; p = 0.001), functional status (m-RS; r = 0.21; p = 0.001) and comorbidity (CIRS-G; r = 0.35; p b 0.0001). 3.2. Cognition and mood Cognitive and mood evaluation of stroke patients are also shown in Table 3. MMSE mean score was 26.0, and women scored lower than males (25.4 vs 26.5; unpaired t-test, p = 0.03). MMSE mean scores significantly correlated (p b 0.0001) with BI (r = 0.29), Lawton scale (r = 0.35), and HADS-Depression (r = −0.46). In addition, HADSDepression mean scores significantly (p b 0.001) correlated with BI (r = −0.28), Lawton scale (r = −0.36), and m-RS (r = 0.22). The proportion of stroke patients who scored≥ 11 points in the HADSDepression subscale was 20%. Prevalence of mood disorders was significantly higher in females than in males (25% vs 15.4%; Chi square, p = 0.05). HADS-Depression mean score was also higher (worse) in females (7.7 vs 6.6; p = 0.02; unpaired t-test). Depressive symptoms were more common in housewives (HADS-Depression mean score: 9.0) compared to retired and active workers (7.1 and 6.3, respectively; ANOVA, p = 0.006). Comorbidity, as measured by CIRS-G total score, was similar among depressed and non depressed stroke patients (6.1 vs 5.4).

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Table 3 Health related quality of life of stroke survivors according to stroke severity, disability and depression ratings. Severity

SIS domains Strength Hand function Mobility ADL/IADL Memory and thinking Communication Emotion Social participation Composite physical domain

Disability

NIHSS≤6

NIHSSN6

n = 144

n = 116

60.4 ± 25.5 40.6 ± 36.6 64.4 ± 24.1 66.2 ± 22.6 73.6 ± 19.8 81.0 ± 17.9 53.1 ± 12.7 59.5 ± 22.4 60.2 ± 21.8

31.5 ± 21.9 8.9 ± 20.1 32.2 ± 22.9 36.5 ± 18.3 67.4 ± 24.8 73.4 ± 21.8 50.9 ± 11.9 39.4 ± 19.1 29.5 ± 16.3

Depression

BI ≤ 60

BI 65–90

BI ≥ 95

HAD-Depb11

HAD-Dep≥11

p⁎

n = 82

n = 91

n = 87

p⁎

n = 208

n = 52

p⁎

b 0.0001 b 0.0001 b 0.0001 b 0.000 0.02 0.002 ns b 0.0001 b 0.0001

30.3 ± 21.7 7.2 ± 15.5 21.5 ± 16.9 28.5 ± 13.2 69.2 ± 23.9 75.8 ± 20.9 51.7 ± 12.4 37.8 ± 17.6 22.7 ± 11.9

42.0 ± 21.1 13.5 ± 20.7 52.2 ± 18.4 49.1 ± 13.8 67.4 ± 23.5 73.6 ± 21.8 50.3 ± 13.1 47.8 ± 19.9 42.7 ± 12.3

69.7 ± 24.9 52.2 ± 35.9 75.0 ± 19.5 80.3 ± 15.7 75.9 ± 18.5 83.5 ± 15.7 54.5 ± 11.3 65.5 ± 22.9 73.1 ± 16.8

b 0.0001 b 0.0001 b 0.0001 b 0.0001 0.03 0.002 ns b 0.0001 b 0.0001

50.3 ± 28.1 28.1 ± 34.9 53.3 ± 28.6 55.5 ± 25.3 73.6 ± 21.8 81.3 ± 18.1 54.1 ± 11.5 53.6 ± 23.1 49.2 ± 25.1

36.4 ± 24.4 20.0 ± 30.6 37.3 ± 24.5 42.9 ± 23.8 59.4 ± 20.9 62.6 ± 20.9 44.2 ± 12.9 38.1 ± 19.2 36.1 ± 20.9

b 0.0001 ns 0.0003 0.001 b 0.0001 b 0.0001 b 0.0001 b 0.0001 0.0007

Mean ± standard deviation; ⁎ ANOVA test; ADL/IADL, activities of daily living/instrumental activities of daily living; BI, Barthel index; HAD-Dep, Hospital Anxiety and Depression Scale, depression-subscale; NIHSS, National Institute of Health Stroke Scale; SIS, Stroke Impact Scale.

HADS-Depression mean scores significantly increased (ANOVA; p = 0.003) across the m-RS stages. HADS-Depression mean score ranged from 5.3 (m-RS 1) to 8.2 (m-RS 4). HADS mean score was 14.1 ± 7.1. Patients independent in the ADL scored 16.2, patients with BI between 65 and 90 scored 15.5, and patients with BI ≤ 60 scored 12.2 (ANOVA; p = 0.0003). Post-stroke depression was significantly associated with female sex, disability, and lower cognitive functioning (p b 0.001). Only 6.5% of stroke patients were on antidepressive treatment prior to admission to the rehabilitation hospital. As patients with PSD were identified at admission, therapeutic interventions were performed accordingly. Approximately one third of stroke patients started antidepressive treatment during rehabilitation. 3.3. Health related quality of life Table 2 also shows SIS 3.0 mean scores. Lowest scores were found in the domains Hand Function, Strength, Mobility, Social participation, and Emotion in stroke survivors. Mean score of the SIS Physical Composite Domain was 46.6 ± 24.8 (males = 48.4; females = 44.6; Mann–Whitney test, p = 0.2). No differences were observed in most of SIS domain mean scores by sex. Memory (74.6 vs 66.6; p = 0.004) and Emotion (53.7 vs 50.5; p = 0.03) mean scores were significantly more affected in females (Mann–Whitney test). As a whole, age was not associated to the SIS domain mean scores. Only a weak correlation of age with Mobility (r = − 0.24; p b 0.0001), and ADL (r = − 0.18; p = 0.003) was found. Education, measured as the number of years of formal education, was weakly associated to the following SIS domains: Hand function, Mobility, ADL, Communication, Emotion, and Social Participation (r, from −0.14 to −0.28). The type of occupation and the marital status did not influence on most SIS domains. Mobility domain was significantly associated with occupation; housewives had worse scores compared to active people (44.6 vs 64.5; Mann–Whitney test, p = 0.01). No association was found between ethnicity and SIS mean scores. No significant relationship was found between comorbidity (as measured by CIRS-G total score) and SIS domains. Only ADL/IADL and Communication domains were significantly affected in those patients with higher number of comorbidities (p = 0.05). Patients with diabetes mellitus significantly had worse scores in the Communication (72.2 vs 79.1; p = 0.02) and Mobility (43.5 vs 51.9; p = 0.05) domains (Mann–Whitney test). SIS mean scores were similar among ischemic and hemorrhagic stroke patients. Patients with TACI had significant lower scores (Kruskal–Wallis, p b 0.0001) in the following SIS domains: Strength (30.9 ± 21.5), Hand function (5.0 ± 11.5), Mobility (32.9 ± 24.6) and ADL (37.8 ± 19.7). Social participation dimension was significantly (p = 0.003) more affected in cardioembolic infarctions (43.8 ± 19.6) than in small vessel strokes (56.9 ± 22.7).

SIS Communication domain significantly correlated (p b 0.001) with HADS-Depression (r = −0.46), HADS-Anxiety (r = −0.36) and MMSE (r = 0.42). SIS Emotion domain significantly correlated with HADSDepression (r = −0.41) and HADS-Anxiety (r = −0.45). Subgroup analysis showed significant lower (worse) scores for SIS dimensions among depressed patients (Mann–Whitney test, p b 0.0001). Social participation domain scored 38.5 ± 19.2 in depressed and 53.6 ± 23.1 in non-depressed patients (Mann–Whitney test, p b 0.0001). SIS Emotion mean scores for patients with and without anxiety were, respectively, 44.3± 12.8 and 54.1 ± 11.5 (Mann–Whitney test, p b 0.0001). Emotion

Table 4 Determinants for Stroke Impact Scale domains (stepwise linear regression analysis). Stroke Impact Scale domains Strength NIHSS Barthel index HAD-Dep Hand function Age Education NIHSS Barthel index ADL/IADL NIHSS Barthel index HAD-Dep Mobility Education Time since stroke NIHSS Barthel index HAD-Dep Memory and thinking Gender MMSE HAD-Dep Communication MMSE HAD-Dep Emotion HAD-Dep Social participation NIHSS Barthel index HAD-Dep Composite Physical Domain Education NIHSS Barthel index HAD-Dep

Standardized coefficient

Standard error

− 0.37 0.27 − 0.18

0.55 0.08 0.37

0.13 0.14 − 0.38 0.31

0.13 0.18 0.70 0.11

− 0.17 0.67 − 0.17

0.36 0.05 0.24

0.10 − 0.11 − 0.14 0.70 − 0.10

0.23 0.04 0.41 0.06 0.29

− 0.15 0.18 − 0.38

2.56 0.37 0.36

0.36 − 0.31

0.32 0.31

− 0.45

0.19

− 0.27 0.21 − 0.31

0.49 0.07 0.33

0.08 − 0.27 0.60 − 0.15

0.18 0.32 0.05 0.23

R2 adjusted

F

p

0.41

52.2

b0.0001

0.40

37.8

b0.0001

0.72

190.1

b0.0001

0.71

105.3

b0.0001

0.27

27.2

b0.0001

0.31

51.9

b0.0001

0.20

54.7

b0.0001

0.34

38.3

b0.0001

0.75

168.1

b0.0001

HAD-Dep, Hospital anxiety and depression scale, depression sub-scale; MMSE, Minimental State Examination; NIHSS, National Institute of Health Stroke Scale.

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domain was also affected in stroke survivors who were independent in their ADL (54.5 ± 11.3). High correlation coefficients were observed between the SIS Physical Composite Domain and the following scales: NIHSS (r = −0.72), BI (r = 0.99), Lawton scale (r = 0.81), and m-RS (r = − 0.83). Significant correlation (p b 0.0001) was also observed between BI and SIS ADL domain (r = 0.87). Physical Composite Domain mean scores decreased as functional status worsened (m-RS 1: 77.5 ± 17.3; m-RS 4: 22.1 ± 12.1; Kruskal–Wallis test, p b 0.0001). Table 3 shows SIS mean scores according to stroke severity, disability and depression ratings. HRQoL of stroke survivors decreased in a significant way as neurological impairment severity (as measured by the NIHSS), disability (as measured by the BI or the Lawton scale), functional status (as measured by the m-RS) and mood (as measured by the HADS) worsened. Depression (HADS-depression subscale), disability (BI) and neurological impairment (NIHSS), resulted the variables that significantly influencing SIS domains (p b 0.0001) in the multivariate regression analysis (Table 4). Similar results were obtained when HADS-Anxiety was used instead of HADS-Depression, and BI was replaced by m-RS or Lawton scale. The adjusted R values were significant and moderate, so measured factors had a relatively large influence on the variability of SIS domain scores. 4. Discussion The impact of stroke can be devastating, leaving a person with residual impairment of physical, cognitive and social functions. HRQoL and subjective well-being of stroke survivors can be influenced by cultural, geographical and anthropological factors, so cross-cultural studies about HRQOL are needed. The present study was developed in a different cultural setting, and the main determinants of HRQoL in Brazilian stroke patients were post-stroke depression, disability and motor impairment. HRQoL was assessed by means of a self-reported stroke-specific HRQOL measure, the SIS 3.0. Compared with the SF-36, a generic measure of HRQoL, the SIS domains are better to capture physical functioning and social well being in patients with stroke [37]. In addition, some SF-36 dimensions may have important floor (e.g., Physical role) and ceiling (e.g., Bodily pain, Emotional role) effects in stroke patients [38]. It may seem that some of the used instruments measure the same area, e.g. ADL in SIS and BI. However BI is usually evaluated by and external observer (e.g. a medical doctor or nurse), whereas the ADL domain of the SIS is a patient's self-reported measure. BI may be relatively insensitive to change over time, and may poorly represent the impact of stroke on a patient's subsequent life. In addition, BI assesses basic ADL and suffers from a severe ceiling effect in individuals with mild and moderate stroke who are independent in their ADL. Nevertheless, convergent validity between SIS domains and functional scales were adequate in this study. Post-stroke depression was the stronger predictor of low HRQoL in Brazilian stroke survivors. Post-stroke depression affects HRQoL, functional recovery, cognitive function and healthcare use in stroke survivors [39]. Prevalence of post-stroke depression was 20% in our population. Decreased social interaction and depression have a negative effect on the HRQoL, which is more pronounced in the females [5]. Lower scores in Physical Function, Thinking, Language and Energy domains have been reported in stroke females [40]. In our study, higher HADS-Depression subscale scores were significantly related to lower (worse) SIS mean scores. Furthermore, a depressive syndrome was independently associated with low HRQoL in most domains of the SIS. Patients with more severe stroke and elevated levels of anxiety also had significantly lower SIS domain mean scores. A relationship between depression and functional status was also observed. In the long-term, coping abilities seem to be of relatively increasing importance for the continued emotional wellbeing of

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stroke survivors [41]. Nevertheless, coping issues were not specifically assessed in this study. Disability is a consistent determinant of HRQoL in most stroke survivors. A substantial proportion of stroke survivors have poor HRQoL and moderate/severe disability in the long-term post-stroke [5–10]. Hand function was the most affected SIS domain in our population. Upper limb impairment at stroke onset occurs in around 85% of stroke patients, and at 3-month it persists in 55–75% [42]. Functional improvement of the upper paretic limb is mainly determined by improvement of the paretic hand, followed by synergistic independent movement of the paretic arm [43]. In our study 58% of stroke patients had some hemiparesis and 35.4% were unable to walk without some assistance. The frequency of these disabilities was similar to observed among older patients at 6 months after stroke in the Framingham study [44]. Disability and functional status, as measured by BI or m-RS, were predictors of HRQoL for all SIS Physical domains and Social participation domain. Mean scores of the SIS domains were significantly higher in the group of more severely affected stroke patients (m-RS 3 and 4). Consequences of stroke affect even people with “mild” stroke. Patients who are perceived functionally independent still experience social participation difficulties, depression, job adaptation problems and vehicle driving difficulties [6]. Emotion, Social participation and Physical domains were affected in Brazilian stroke patients who were considered independent in their ADL. HRQoL should be routinely assessed in stroke survivors to detect infradiagnosed, potentially treatable, persisting consequences of stroke, and psychosocial problems. Nevertheless, not all stroke patients are able to self-report HRQoL measures because of cognitive or communication problems. It is estimated that around 20% of stroke patients are excluded from HRQoL studies due to aphasia or vascular dementia. We did not include this sub-population of stroke survivors, who may experience a deeper impact on their HRQoL, in the study. Using caregivers and proxy raters may prevent the exclusion of those patients who are most severely affected by stroke [45]. This study has also other limitations: 1) it was performed in a reference rehabilitation center and patients with mild stroke may have not been included in the study; 2) this is a cross-sectional study, which does not provide information about changes over time in regard HRQoL in stroke patients. 3) not all patients were assessed at the same time after stroke, and the time interval between stroke and outcome evaluation was wide. Nevertheless, the strength points of this study are: 1) a large sample of Brazilian stroke patients; 2) a wide range of age, stroke subtypes and degrees of functional level; 3) a standardized evaluation of motor, functional, cognitive, emotional, and HRQoL aspects. HRQoL information will be helpful in developing more comprehensive rehabilitation interventions in addition to specific therapeutics. As post-stroke depression is a treatable condition, early diagnosis and treatment is of paramount importance. Social support plays as a moderator of the effects of disability on well-being. Group exercises and self-help group activities may help in promoting socialization and reintegration into community life in stroke patients. Interventions targeting mood and ADL training may also have the potential to improve HRQoL in stroke survivors [46]. In conclusion, physical and psychosocial well being was deeply affected after stroke. Post-stroke depression and disability are consistent determinants of HRQoL in Brazilian stroke patients. Further studies should be performed to assess the burden of stroke in family members and caregivers of Brazilian stroke patients. References [1] The WHOQOL Group. Development of the World Health Organization WHOQOLBREF quality of life assessment. Psychol Med 1998;28:551–9. [2] Carod-Artal FJ. Quality of life and stroke. In: Martínez Martín P, editor. Calidad de Vida en Neurologia. Madrid: Ars Medica; 2006. p. 221–40.

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