Recovery after Stroke: Strategies to Improve

Cerebrovasc Dis 2009;27(suppl 1):204214 DOI: 10.1159/000200461

Published online: April 3, 2009

Quality of Life after Stroke: The Importance of a Good Recovery

Francisco Javier Carod-Artal a Jos Antonio Egido b
a b

Department of Neurology, Sarah Hospital, The Sarah Network of Rehabilitation Hospitals, Brasilia, Brazil; Stroke Unit, Department of Neurology, San Carlos Hospital, Madrid, Spain

Key Words Caregiver well-being Quality of life Stroke outcome

Introduction

Abstract Background: Health-related quality of life (HRQoL) is a recognized and important outcome after stroke. An increased survival and the presence of moderate impairment in longterm stroke survivors impact their HRQoL. Methods: HRQoL measures and HRQoL determinants in stroke survivors are reviewed. Results: Stroke is the leading cause of long-term disability in western countries. Specific HRQoL scales have been developed in the last years, such as the Stroke Impact Scale, the Stroke Specific Quality of Life Scale, the Stroke and Aphasia HRQoL Scale, and the Burden of Stroke Scale. Disability and poststroke depression are consistent determinants of HRQoL. Other determinants include female sex, coping strategies, and social support. Poststroke depression affects HRQoL, functional recovery, cognitive function and healthcare use in stroke survivors. Stroke caregivers have lower HRQoL, greater prevalence of stress and depression, economical burden, and changes in social relationships. Advancing age and anxiety in patients and caregivers, high dependency and poor family support identify caregivers at risk of adverse outcomes. Conclusions: Physical and psychosocial well-being is greatly affected in stroke survivors and their caregivers. Copyright 2009 S. Karger AG, Basel

Traditional stroke outcomes have focused on 1-year mortality, annual recurrence and 1-year disability, and have been extensively studied in the literature [1]. Accordingly, functional assessment scales were developed with the purpose of measuring neurological impairment and disability in stroke survivors. Patient outcomes such as self-perception, subjective well-being and health-related quality of life (HRQoL) have been increasingly added to the stroke literature in the last years. In a recent search in Medline until March 2008, 1,940 articles were obtained by using the key words quality of life and stroke. The purpose of this paper was to review HRQoL in stroke survivors and the determinants of HRQoL in stroke patients and their caregivers.

Disability and Stroke

Stroke is the leading cause of long-term disability in western countries, and functional outcome depends on stroke severity. The prevalence of stroke survivors with incomplete recovery has been estimated at 460/100,000, and one third require care in at least one activity of daily living (ADL) [2]. Between 50 and 70% of stroke survivors regain functional independence, but 1530% are permanently disabled, and 20% require institutional care at 3 months afFrancisco Javier Carod-Artal, MD, PhD Neurology Department, Sarah Hospital SMHS, quadra 501, conjunto A Braslia DF 70330-150 (Brazil) Tel. +55 61 319 1555, Fax +55 61 319 2680, E-Mail javier@sarah.br

2009 S. Karger AG, Basel 10159770/09/02770204$26.00/0 Fax +41 61 306 12 34 E-Mail karger@karger.ch www.karger.com Accessible online at: www.karger.com/ced

ter onset [1, 3]. Upper limb impairment at stroke onset occurs in 85% of stroke patients, and at 3 months it persists in 5575% [4]. In most of stroke patients, disability remains stable between 69 months and 5 years after stroke [5]. The following disabilities have been observed among older patients at 6 months after stroke in the Framingham study: 50% had some hemiparesis, 30% were unable to walk without some assistance, 26% were dependent in the ADL, 19% had aphasia, 35% had depressive symptoms, 26% were institutionalized in a nursing home [6]. Predictors of worse functional recovery in stroke are shown in table 1.

Table 1. Predictors of worse functional recovery in stroke pa-

tients Advanced age History of previous stroke Urinary incontinence Persistent visuospatial deficit Cognitive decline Poststroke depression Severity of motor deficit Major hemispheric stroke syndrome Level of dependence in the ADLs at stroke onset Absence of social support Delayed stroke rehabilitation ADL = Activities of daily living.

HRQoL in Stroke: Conceptual Framework

Quality of life (QoL) has been defined by the WHOQOL group as individuals 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 [7]. QoL can also be defined as a persons sense of well-being, purpose in life, autonomy, ability to assume worthwhile roles, and ability to participate in significant relationships [8]. A related concept, HRQoL has been defined as the value assigned to duration of life as modified by the impairment, functional state, perceptions and social opportunities that are influenced by the disease, injury, treatment or policy. Definitions of QoL and HRQoL should not be used interchangeably to ensure validity and reliability of research findings [8]. According to the theory of Wilson and Cleary, health can be defined as a continuum with biological variables at one extreme and overall HRQoL at the other extreme [9]. QoL refers to a diverse range of a patients perceptions and experiences of disease that are of central concern in terms of treatment goals. The objective aspects of HRQoL cover the domain physical function, and this approach focuses upon the individuals ability to function physically in terms of mobility and performance in the ADL. Subjective dimensions of HRQoL focus upon respondents feelings and perceptions, and how patients feel about their health status. The increase in survival in stroke patients and the aging of the population mean that clinicians are likely to see long-term stroke survivors who are living longer with stroke sequelae [10]. Stroke patients commonly suffer from physical role alteration, mood disorders, cognitive impairment and decreased social interaction [11]. When applied to stroke, a limiting factor of the biomedical apQuality of Life and Stroke

proach is the emphasis on motor symptoms. In the social model of stroke, HRQoL is a complex interplay between stroke severity, social support and health-promoting behaviors, including stroke secondary prevention. Assessment of HRQoL in stroke survivors should be multidimensional, comprising at least several domains: physical (i.e. motor deficit, spasticity, ataxia, dysarthria, dysphagia, pain, sleep disturbances and fatigue), functional (mobility, care), mental (mood, cognition, satisfaction, and self-perception) and social (work, social network and social role), and requires a subjective rating by the patient.

Why Should HRQoL Instruments Be Used in Clinical Practice?

The Barthel Index (BI) and the modified Rankin Scale are the most commonly used scales to measure outcome after stroke in clinical trials [12, 13]. Nevertheless, they have some shortcomings: BI and modified Rankin Scale are relatively insensitive to change over time, and may poorly represent the impact of stroke on a patients subsequent life. Several aspects of functional independence, which include language, cognition, visual field, neurogenic pain and mood, are not covered. In addition, BI assesses basic ADL and suffers from a severe ceiling effect (percentage of patients with maximum score) in individuals with mild and moderate stroke who are independent in their ADL. The standardized use of specific HRQoL scales in clinical practice should not only be seen as a research approach to the social model of stroke. There are several areas of concern in which they may be helpful: (1) to detect infraCerebrovasc Dis 2009;27(suppl 1):204214

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Table 2. Generic health profiles used in stroke patients [7, 1418]

Name Short-form 36 (SF-36) Sickness Impact Profile (SIP-136) SIP-68 item version Nottingham Health Profile WHOQOL-Bref EuroQoL-5D Health Utility Index (HUI 2/HUI 3)

Domains Items 8 12 36 136

Areas Physical functioning, physical role limitations, bodily pain, general health, vitality, social functioning, emotional role limitations, emotional well-being Body care and movement, mobility, ambulation, social interaction, emotional behavior, alertness behavior, communication, household management, sleep and rest, recreation and pastimes, eating, and work Somatic autonomy, motor control, psychological autonomy and communication, social behavior, emotional stability and mobility range Part I: energy level, pain, emotional reaction, sleep, social isolation, physical ability Part II: seven life areas affected Physical health and well-being, psychological health and well-being, social relations environment Mobility, self-care, daily activities, pain/discomfort, and mood (anxiety/depression) Emotion, cognition, self-care, pain, vision, hearing, speech, ambulation, dexterity

6 6 4 5 9

68 45 26 5 9

WHOQOL-Bref = World Health Organization Quality of Life scale abbreviated version.

diagnosed, potentially treatable, persisting consequences of stroke, such as psychosocial problems; (2) to assess stroke domains that are not fully covered by neurological exploration; (3) to evaluate stroke outcomes in clinical trials; (4) to assess therapeutic interventions in clinical practice, and (5) to evaluate public health interventions.

Generic Measures to Assess HRQoL in Stroke

There appears to be a high level of variability in the instruments that are used to assess HRQoL in stroke survivors. Historically, the first instruments were generic measures, which can be classified into health profiles and utility measures. Health Profiles Health profiles cover aspects of physical, mental and social functions and can be applied to a wide variety of conditions. They allow comparisons of health status between patients with different diseases. Health profiles used in stroke patients and their domains are summarized in table 2 [7, 1418]. Most of the generic measures rely on self-report and can be either self- or interviewer administered. Generic scales have some limitations in stroke: (1) a limited content validity, because specific stroke areas that
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are relevant to stroke patients may not be covered (hemiparesis, vision, language, concentration and memory); (2) a limited value in assessing stroke interventions owing to their lack of responsiveness to change in HRQoL [19]. Although the Short Form 36 (SF-36) is the most used health profile in stroke survivors, it has a floor and ceiling effect in some domains. The SF-36 Physical function has a major floor effect and the SF-36 Social function domain has been shown to be unable to capture levels of social functioning in stroke patients because of the limited number of items (2 items) and the relative ease of endorsing these items, provoking a major ceiling effect [20]. Utility Measures Quality-adjusted life years are an outcome in cost-effectiveness analysis. They are calculated by multiplying the time spent in a health state by the value assigned to a particular health state. With quality-adjusted life years, each year of life after a stroke is adjusted for its quality. For example, if major stroke is assumed to have a QoL of 0.2, then 5 years lived after a major stroke would be counted as 1 quality-adjusted life year. Utility measures are based on the analysis of numerical values about the possible health states (preferences). Utility measures assess HRQoL quantitatively as a fraction of ideal health, with a score of 1 representing perfect health, a score of 0 representing death, and negative
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scores representing health states worse than death (table 3) [2123]. There are several techniques for obtaining utilities, such as visual analog scales, the time tradeoff and the standard gamble [21]. The Health Utility Index, the Quality of Well-Being Scale and the EuroQol-5D are preference-based HRQoL measures. They can be used to summarize a diverse range of stroke outcomes, to integrate the effects of mortality and morbidity, to compare the burden of stroke to other conditions, and to compare programs through cost-utility analyses [22, 23].

Table 3. Measures of utility in stroke survivors and reported

health state values for several stroke sequels [2123]

Utility measure Mild stroke Health Utility Index EuroQoL Visual analogue scale Visual analogue scale Visual analogue scale Visual analogue scale Visual analogue scale Neurological impairment NIH Stroke Scale <6 NIH Stroke Scale <6 Nondominant side hemiparesis Dominant side hemiparesis Hemiparesis Aphasia Vascular cognitive decline Value 0.55 0.600.70 0.50 0.36 0.42 0.33 0.30 0.25 00.30 0.45 0.45 0.28 0.130.60 0.06 0.06 to 0.02

Specific HRQoL Stroke Scales

Specific HRQoL scales contain additional items that measure domains that are relevant to stroke patients and family members, such as vision or language impairments. In the last years, several specific HRQoL scales [2431] have been developed (table 4). The Stroke Impact Scale (SIS) 3.0 version and the Stroke-Specific Quality of Life Scale (SS-QoL) are the most used and will be reviewed briefly. Their metric properties (precision, acceptability, validity, reliability and responsiveness to change over time) are adequate [32] (table 5). The Stroke Impact Scale The SIS was developed from the perspective of patients and caregivers to detect persistent consequences of stroke, primarily in mild-to-moderate stroke patients [25]. The SIS 3.0 version is a 59-item self-report assessment of stroke outcome used to assess HRQoL [33] and has 8 domains, as shown in table 4. Scores for each domain range from 0 to 100, and higher scores indicate better HRQoL. The SIS 3.0 also includes a question (item 50) to assess the patients global perception of recovery. The respondent is asked to rate his/her percentage of recovery on a Visual Analog Scale of 0100, with 0 meaning no recovery and 100 meaning full recovery. Construct validity of telephone- and mail-administered SIS is adequate [34, 35]. The SIS-16 is a short Composite Physical Domain that includes selected items from the Hand function, ADL/instrumental ADL, and Mobility domains [36]. The SIS-16 incorporates more complex activities than the BI, such as performing heavy household chores (e.g. vacuuming and doing laundry), walking fast, and walking one block to minimize ceiling effects. The SIS Participation domain and the SIS-16 can be used as stand-alone scales to assess social and physical function.
Quality of Life and Stroke

Moderate and severe stroke Health Utility Index NIH Stroke Scale >6 EuroQoL NIH Stroke Scale >6 Standard gamble Severe hemiparesis Standard gamble Transcortical aphasia Visual analogue scale Nonaphasic hemiplegia Visual analogue scale Hemiplegia plus aphasia Visual analogue scale Severe global aphasia Visual analogue scale Vascular dementia

The Stroke-Specific Quality of Life Scale The SS-QoL 2.0 is a 35-item scale that has 7 domains, as shown in table 4. Individual domains consist of 310 questions that are averaged to generate an overall continuous score with a minimum value of 1 (worst) and a maximum value of 5 (best) [26]. The Physical function questions relate to difficulty with mobility, work, selfcare, and arm or hand function. The Language domain relates to difficulty in speaking and being understood, whereas the Thinking domain assesses difficulty with memory or concentration. The Energy questions ascertain feelings of fatigue and their effects on activities, whereas depression-related feelings are captured by the Mood domain. Role function assesses whether the subject participates in activities with friends and family to the degree desired. The SS-QoL summary score, an overall measure of QoL, is calculated by averaging the 7 domain scores [37].

The Use of Proxies to Assess HRQoL in Stroke

The ability to self-assess HRQoL after stroke can be limited by cognitive impairment, fatigue, stress or language disturbances (aphasia). In many stroke outcome studies, 25% of the subjects are excluded from HRQoL assessments because of cognitive and language disorders.
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Table 4. Specific health-related QoL stroke scales [2431]

Name SIS 3.0 SIS 2.0 SS-QoL SS-QoL 35 item-version Stroke and Aphasia QoL Scale (SAQOL-39) Burden of Stroke Scale (BOSS) SIP stroke adapted-30 item version (SIP-30) Newcastle stroke-specific QoL measure Hemorrhage Stroke QoL Scale

Domains Items 8 8 12 7 4 3 8 11 7 59 64 49 35 39 65 30 56 53

Description of the domains strength, hand function, mobility, physical and instrumental ADL, memory and thinking, communication, emotion and social participation the same domains as SIS 3.0 self-care, mobility, upper extremity function, work, vision, language, thinking, personality, mood, energy, family and social roles physical function, language, vision, thinking, energy, mood, and role function physical factor, psychosocial factor, communication, energy physical burden, emotional burden, cognition body care and movement, social interaction, mobility, communication, emotional behavior, household management, alertness behavior, ambulation feelings, ADL/self-care, cognition, mobility, emotion, sleep, interpersonal relationships, communication, pain/sensation, vision, fatigue general outlook, physical functioning, cognitive functioning, relationships, social and leisure activities, emotional well-being, and work and financial status

Table 5. Metric properties of the most commonly used specific HRQoL stroke scales

Items

Acceptability
floor effect % ceiling effect %

Reliability
internal consistency Cronbachs reproducibility ICC re-test

SIS 3.0

Strength Hand function Mobility ADL/IADL Memory Communication Emotion Social participation Energy Family roles Language Mobility Mood Personality Self-care Social role Thinking Upper-extremity function Vision Work

4 5 10 12 8 7 9 9 3 3 5 3 5 3 5 5 3 5 3 3 39

1.7 45.9 1.7 0 0 0 0 1.2 17 4 1 1 1 4 3 9 4 1 1 1 0

6.3 6.3 4.6 5.8 12.6 17.3 0 4.0 18 35 37 23 30 23 51 14 13 31 63 63 0

0.81 0.95 0.94 0.89 0.88 0.82 0.49 0.82 0.88 0.79 0.85 0.86 0.80 0.77 0.89 0.85 0.73 0.83 0.81 0.81 0.93

0.81 0.94 0.89 0.83 0.87 0.81 0.48 0.79 0.95 0.75 0.65 0.90 0.84 0.71 0.94 0.76 0.81 0.91 0.99 0.92 0.98

SS-QoL

SAQOL-39

Numbers in bold show those domains with less desirable psychometric attributes. IADL = Instrumental ADL; ICC = intraclass correlation coefficient.

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Using proxy raters can prevent exclusion of severely affected patients and avoid systematic bias [38]. The reliability of proxy raters has been examined with some generic HRQoL measures, including the Health Utility Index, EuroQol-5D, and Sickness Impact profile [39, 40]. In the last years, several studies have looked at proxy and self-report agreement with stroke-specific measures, including the SIS [41], the SS-QoL [42] and the SAQOL-39 [43]. Proxies tend to rate the stroke survivors as more impaired or with a lesser HRQoL than the subjects rate themselves. The proxy bias toward overrating the severity of the patients condition tends to increase as the severity of the stroke increases. Lower levels of proxy agreement are especially prominent for the more subjective domains of HRQoL, like emotional well-being or fatigue, and are remarkably consistent across various HRQoL scales. Proxy-patient ratings are more consistent when rating observable behaviors [41].

Table 6. Determinants of health-related QoL in stroke survivors that could influence individuals adjustment to life after stroke

Determinants of QoL in Stroke Survivors

A complex network of factors that may influence an individuals adjustment to life after stroke exists. Social background, neurological impairment, the time between the stroke and the assessment, disability, cognition, mood, coping styles and social support are significant predictors of HRQoL (table 6). Compared with people who have not experienced a stroke, stroke survivors report a lower sense of well-being, and are more likely to be living with a greater number of other comorbid conditions [44]. Age, nonwhite race, comorbidities and reduced upper extremity function are variables associated with poor physical role, as measured by the SF-36 [45]. Poststroke fatigue has a significant association with instrumental ADL and HRQoL, and may be confounded by depressive symptoms and motor weakness [46]. Some predictors of special concern will be briefly reviewed. The Female with Stroke Several studies have found that women who survive stroke have less favorable outcomes than their male counterparts. Women are less likely to be discharged home than men and are more likely to have physical impairments and limitations in their ADL [47]. Women have a lower overall HRQoL [10]. Compared with males, females had lower functional recovery and poorer HRQoL 3 months after discharge in the Michigan
Quality of Life and Stroke

Demographic variables Age Ethnicity Female gender Marital status Income Education Medical conditions Comorbidity Associated vascular risk factors: diabetes, cardiac disease, hypertension Chronic pain Fatigue Falls Neurological impairment Stroke subtype Severity of hemiparesis Aphasia Hemianopsia Attention deficit Specific physical conditions linked to stroke sequelae Swallowing disorders Communication problems due to dysarthria, dysphasia, dysphonia Spasticity Painful shoulder Genu recurvatum and hemiparesis of the lower limb Bladder and sexual dysfunction Side effects of pharmacological treatment Functional status Disability Prestroke ambulatory status Dependence in instrumental activities of daily living Cognitive and behavioral factors Cognitive decline Vascular dementia Behavioral symptoms Psychological factors Mood disorders: anxiety, depression Coping Stressful life events Social variables Social network and social support Return to work Social restrictions due to chronic use of medication (anticoagulation, antiepileptic drugs) Caregiver burden Patient and family economical burden

statewide stroke registry [48]. Females had lower scores in Physical function, Thinking, Language and Energy domains of the SS-QoL 3 months after discharge [48]. The European BIOMED study also found that women
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Table 7. Predictors of HRQoL in long-term studies of stroke survivors

Country/first author Study China/Kwok Spain/Carod-Artal Germany/Hacke Norway/Naess Sweden/Jonsson Australia/Paul United States/ Nichols-Larsen UK/Patel rehabilitation unit stroke unit hospital-based study hospital-based study Lund Stroke Register NEMESIS Study EXCITE trial population-based study

n 247 90 77 190 304 356 322 397

Follow-up 3 and 12 months 12 months 48 months 6 years 4 and 16 months 5 years 39 months 1 and 3 years

Measures WHOQOLBref SIP, SF-36 EuroQoL SF-36 SF-36 AQoL SIS 3.0 SF-36

Predictors female sex, pain, tube feeding, nursing home residence, welfare assistance, lack of physical exercise depression, disability, female sex, housewife, social support, stroke subtypes depression, cognition, physical functioning, urinary incontinence depression, fatigue, unemployment in young adults depression, functional status, age and gender age, lower socioeconomic status, stroke severity age, gender, education, stroke type, comorbidity, concordance paretic arm = dominant hand physical: female, manual worker, diabetes, cognition, urinary incontinence; mental: cognition, angina

AQoL = Assessment of QoL; EXCITE = extremity constraint-induced therapy evaluation; NEMESIS = North East Melbourne Stroke Incidence Study.

were more likely to be disabled at 3 months, as defined by a BI score of 70 or less after adjusting for age and country [49]. The Tinzaparin in Acute Ischemic Stroke Trial (TAIST) reported that female sex was predictive of poor functional outcome in stroke [50], as measured by the SF36 in 1,268 stroke survivors 6 months after stroke. Physical function and mental health domains of the SF-36 were lower in females even after correction for age and stroke severity. Functional Status and Long-Term Disability Disability is a consistent determinant of HRQoL in stroke survivors in almost all studies. Long-term determinants of HRQoL have been studied in several prospective studies, and a substantial proportion of stroke survivors have very poor HRQoL in the long term after stroke [5159]. Predictors of HRQoL in long-term studies of stroke survivors are shown in table 7. Nevertheless, functional status may vary over time after stroke. When comparing Role-physical and Role-emotional domains of the SF-36 between acute stroke onset and 6 months after stroke, an improvement may be observed [51]. The findings of these studies should be replicated with specific HRQoL scales because the majority of them used generic HRQoL instruments, mostly the SF-36 [20].

Shoulder Pain There is an increased risk of shoulder pain in stroke patients with impaired arm motor function. Shoulder pain may restrict patients daily life after stroke. Almost one third of stroke patients develop shoulder pain after stroke onset, a majority with moderate to severe pain [60]. Higher pain intensity correlate with female sex and depression, and its persistence may provoke sleep disturbances. Prevalence of pain after stroke decreases with time, and around 20% still have moderate to severe pain 1 year after stroke. Late pain after stroke is usually more severe, and affects the patients well-being [61]. Sexual Dysfunction Sexual dysfunction and dissatisfaction with sexual life are common in both male and female stroke patients and in their spouses, and occur in at least 7080% of pairs. A majority of the stroke patients report a marked decline in all sexual functions such as libido, coital frequency, erectile and orgasmic ability, and vaginal lubrication. Male poststroke impotence has been found in at least 50% of males. Libido decline closely correlates with depression and psychosocial factors. Psychological and social factors seem to exert a strong impact on sexual functioning and HRQoL after stroke [62, 63].
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Psychological Adaptation to Stroke Sequel and Coping Adaptation to stroke sequel can be viewed as a complex interplay between appraisal and coping. Appraisal refers to the subjective meaning given to a particular situation such as threat, challenge or harm (primary appraisal) and the evaluation of personal resources available to copy (secondary appraisal), whereas coping refers to actual strategies including thoughts and behaviors, that an individual uses to regulate distress, to manage the issue of distress or to maintain positive well-being [64]. Appraisal and coping strategies related to stroke change over time [65]. Initial adaptation may predict depressive symptoms 6 months after stroke. Perceived uncontrollability of the situation also increases in the first 6 months after stroke for spouses. In the long term, coping abilities seem to be of relatively increasing importance for their continued well-being [66]. Some specific coping strategies (tenacious goal pursuit, flexible goal adjustment) may be determinants of HRQoL in the chronic stage of stroke [67]. Emotional and Social Factors Psychosocial correlates (depression, social contacts, family, and work status) may also predict HRQoL in persons after stroke [68]. Depression commonly occurs after a stroke, with an estimated prevalence as high as 30% in the 1st year after the event. Poststroke depression affects HRQoL, functional recovery, cognitive function and health care use in stroke survivors [69]. Decreased social interaction [70] and depression [10] has a negative effect on the HRQoL, which is more pronounced in the female sex. Emotional factors also affect those stroke survivors considered fully recovered. Patients who are perceived as functionally independent at 3 months after a stroke still experience social isolation and social participation difficulties, depression, job adaptation problems and vehicle driving difficulties [71]. Results of psychosocial studies should be taken with caution since social, cultural and geographic influences may have a different impact in each region of the world.

experience greater burden compared with younger caregivers [72, 73]. Lower HRQoL, greater prevalence of stress and depression, economical burden, lack of social support and changes in social relationships have been reported in stroke caregivers [7277]. Participation domains (personal relationships, employment and recreation) are the most commonly affected in spouses of stroke patients when assessing their HRQoL [78]. Caregiver HRQoL can be adversely affected by patients disability and by caregivers age and physical health. Mental health, Vitality, Pain and General health are the most frequently affected SF-36 domains in caregivers [73]. Anxiety and depression are very common in stroke survivors and their caregivers and determine caregiver burden. The HRQoL of primary caregivers appears to decrease over time, particularly mental health [79]. Prevalence of depression among stroke caregivers has been estimated to be at least 20% [80]. Follow-up studies showed that caregivers depression and lack of family support are determinants of caregiver burden [74]. More than 40% of caregivers recognize that their role is emotionally exhausting 1 year after stroke, as measured by Zarits Burden Scale [73]. The presence of pain and depressive symptoms in caregivers can also affect their perception of pain in stroke patients. It has been reported that depressed caregivers can underestimate pain experienced by patients, whereas caregivers with pain may overestimate patients pain [81]. Especially spouses of stroke patients with physical and cognitive impairments and with emotional/behavioral disorders are in need of support over a long time period. Caregiver training may reduce the impact of caregiving [75]. Primary caregivers of stroke survivors who received professional support reported a significant increase in social activities and improved their HRQoL [82].

HRQoL as Outcome in Clinical Interventions

HRQoL and Burden in Caregivers of Stroke Patients

The burden of the caregivers in the long-term management of stroke patients is substantial. Health status of stroke survivors, the amount of direct care, the help and support that caregivers obtain from family and society influence their perceived level of burden. The majority of caregivers are women and spouses, and older caregivers
Quality of Life and Stroke

Social support acts 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 of stroke patients. Interventions targeting handicap, mood and ADL training have the potential to improve HRQoL independently of physical impairment and disability in stroke survivors. Although intervention evaluation using HRQoL measures is still rare in stroke research, there are some cliniCerebrovasc Dis 2009;27(suppl 1):204214

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Table 8. Clinical assessment of stroke patients using HRQoL measures

Trial Blind, randomized, controlled Mant et al. [82] Randomized controlled Boter et al. [84] Uncontrolled Leeds et al. [85] Randomized McCullagh et al. [75] Randomized blind-controlled Studenski et al. [83] SAINT I Trial Lees et al. [87]

Therapy family support vs. normal care outreach nursing stroke care discharge to a care home/own home caregiver training supervised therapeutic exercise in the subacute recovery stage of stroke NXY treatment in acute stroke

Measure SF-36 SF-36 EuroQoL EuroQoL SF-36 EuroQol SIS

Outcome improvement in all SF-36 domains HRQoL not improved better HRQoL in subjects discharged home better caregiver HRQoL at 3 months and 1 year improvement in social function improvement in visual analogue scale, no improvement in SIS scores

cal trials that have used HRQoL assessment as a primary or secondary outcome (table 8) [75, 8287]. Training caregivers during patients rehabilitation also reduces caregiver burden and improves psychosocial outcomes in stroke patients and their caregivers [86].

depressive symptoms and decreased social support are related to lower health status. More attention to overall functional ability, nonmotor symptoms, comorbidities and psychological and social factors is needed in stroke research. Stroke caregivers are also at risk of adverse outcomes, and stroke rehabilitation needs to be both patient and caregiver oriented.

Conclusions

Physical and psychosocial well-being is greatly affected after stroke. Specific measures have been developed to assess HRQoL in stroke survivors. Even after adjustment for physical functioning and stroke severity, significant

Disclosure Statement
The authors report no conflicts of interest.

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