Journal of Neuroscience Nursing:
Long-Term Health-Related Quality of Life of Stroke Survivors and Their Spousal Caregivers
Godwin, Kyler M.; Ostwald, Sharon K.; Cron, Stanley G.; Wasserman, Joan
Sharon K. Ostwald, PhD RN FGSA FAHA, is Professor Emerita at the University of Texas Health Science Center at Houston, School of Nursing, Houston, TX.
Stanley G. Cron, MSPH, is a Research Instructor and Statistician at the University of Texas Health Science Center at Houston, School of Nursing, Houston, TX.
Joan Wasserman, DrPH RN, is Program Director at the Office of Extramural Programs, National Institutes of Health/National Institute of Nursing Research, Washington, DC.
Questions or comments about this article may be directed to Kyler M. Godwin, PhD MPH, at email@example.com. She is a Postdoctoral Fellow at Baylor College of Medicine and the Houston VA HSR&D Center of Excellence, Michael E. DeBakey VA Medical Center, Houston, TX.
This study was supported by grants from the Rehabilitation Nursing Foundation (J. Wasserman, PI) and the National Institutes of Nursing Research, National Institutes of Health (S. K. Ostwald, PI, NR035316).
The authors have no conflicts of interest to declare, but note that Dr. Wasserman’s and Dr. Godwin’s participation in this project occurred during their tenure at the University of Texas Health Science Center at Houston, School of Nursing and does not reflect the views of the National Institutes of Health, the VA, or the United States Government.
ABSTRACT: Because treatment for stroke has improved, individuals are living longer with the effects of a stroke. The resulting long-term impairment can affect both stroke survivors’ and their caregivers’ health-related quality of life (HRQOL). Few studies have examined the HRQOL of stroke survivors and their caregivers greater than 2 years poststroke. The stroke survivors and their spousal caregivers (n = 30 dyads) who had previously completed a 12-month study after discharge from inpatient rehabilitation were assessed at 3–5 years poststroke. The HRQOL and related outcomes were measured for stroke survivors and caregivers. Data from baseline to 12 months were used in conjunction with data from this study. Linear mixed models were used to analyze the change in repeated measures over time. Multiple linear regression was used to analyze the relationship of generic HRQOL to related psychosocial outcomes. The stroke survivors were an average of 4.68 years poststroke. The mean age for stroke survivors and caregivers was 70.8 and 64.9 years, respectively. Most stroke survivors were men (80%) and non-Hispanic White (70%). Among stroke survivors, depression decreased from baseline to 12 months (p = .04) but increased from 12 months to the end of follow-up (p = .003). The caregivers’ depression decreased from baseline to all time points (p = .015). Stroke-specific HRQOL showed statistically significant (p < .03) decreases between 12 months and end of follow-up. Increased number of illnesses and older age were associated with caregivers’ lower physical HRQOL score (p = .004). Higher depression was associated with lower mental HRQOL score for both caregivers and stroke survivors (p = .003 and p = .011, respectively). Both stroke survivors and caregivers continue to experience negative stroke-related health outcomes for many years after the initial stroke; some of these outcomes even worsen over time. These findings illustrate the need for ongoing psychological and medical evaluation for both long-term stroke survivors and caregivers. Development and testing of targeted behavioral interventions are also warranted.
Stroke is a chronic, disabling condition affecting millions of people (Roger et al., 2012). The comorbidities and lifestyle changes associated with stroke can put substantial burden on stroke survivors and their caregivers, which ultimately can affect both of their health-related quality of life (HRQOL). The HRQOL encompasses the physical, functional, psychological, and social dimensions of health (de Haan, Aaronson, Limbur, Hewer, & van Crevel, 1993). Although there has been considerable discussion in the stroke rehabilitation literature on what constitutes quality of life after a stroke and how it is measured during the acute and rehabilitative phases of recovery up to 1 year poststroke (Geyh, Kollertis, Grimby, & Stucki, 2007; Kwok et al., 2006; Olsson, Soderfeldt, & Samuelsson, 1996; Secrest & Zeller, 2007; White et al., 2007), limited attention has been given to the natural history of HRQOL in both long-term stroke survivors and family caregivers greater than 2 years after a stroke.
Researchers have often studied stroke survivors or caregivers in isolation from each other. The Auckland Stroke Study found that, when compared with the general population, stroke survivors 6 years poststroke scored lower on physical functioning and general health as measured by the SF-36, a measure of generic HRQOL (Hackett, Duncan, Anderson, Broad, & Bonita, 2000). Findings from the North East Melbourne Stroke Incidence Study have been reported on stroke survivors at 2, 5, and 7 years poststroke; 20%–25% of stroke survivors reported very low HRQOL at all three time points (Leach, Gall, Dewey, Macdonell, & Thrift, 2011; Paul et al., 2005; Sturm et al., 2004). In addition, a 10-year follow-up study of the South London Stroke Registry reported physical domain HRQOL scores, as measured by the SF-12, to remain relatively stable from 3 months to 10 years poststroke whereas mental domain HRQOL scores varied over time (Wolfe et al., 2011).
Similar to stroke survivors, it has been suggested that HRQOL may decline over time for family caregivers (White, Mayo, Hanley, & Wood-Dauphinee, 2003). Despite the call for caregivers of stroke survivors to be included in longitudinal research of HRQOL (Hopman & Verner, 2003; Lim & Zebrack, 2004), little has been reported in the literature regarding the long-term HRQOL of caregivers of stroke survivors. However, HRQOL of family caregivers more than 2 years poststroke has been reported in a few studies (Bluvol & Ford-Gilboe, 2004; McPherson, Wilson, Chyurlia, & Leclerc, 2011; Morimoto, Schreiner, & Asano, 2003). A cross-sectional study of Canadian stroke survivors and their spousal or committed partner caregivers who were, on average, 2.5 years poststroke found caregivers to have higher quality of life than stroke survivors as measured by the Reintegration to Normal Living Index, which was used as a proxy for quality of life (Bluvol & Ford-Gilboe, 2004). Conversely, among a sample of Japanese caregivers and stroke survivors, only 42.3% of caregivers reported “good” HRQOL as measured by the SF-12, whereas 63% of stroke survivors reported “good” HRQOL (Morimoto et al., 2003). A separate study of Canadian stroke survivors and their caregivers found HRQOL of caregivers to be moderately correlated with HRQOL of stroke survivors (McPherson et al., 2011). Although these studies have included measures of HRQOL for both stroke survivors and caregivers, all of these studies have been cross-sectional studies making it impossible to know the change in HRQOL and related outcomes for caregivers over time.
Previous research has shown that depressive symptoms among stroke survivors and their spouses are frequent and associated with decreased HRQOL (Kong & Yang, 2006; Sturm et al., 2004). Not only is depression in stroke survivors common immediately after stroke, but it has been shown to persist over time (van de Port, Kwakkel, Bruin, & Lindeman, 2007) with risk of occurrence being similar for those in early, middle, and late stages of stroke recovery (Hackett, Yapa, Parag, & Anderson, 2005). Likewise, depressive symptoms among spouses of stroke survivors have been reported across the stages of stroke recovery (Berg, Palomäki, Lönnqvist, Lehtihalmes, & Kaste, 2005; Visser-Meily et al., 2009). Spouses of stroke survivors have shown decreases in depression initially (Berg et al., 2005; Visser-Meily et al., 2009) but an increase in depression at 3 years poststroke (Visser-Meily et al., 2009).
Those of us who care for long-term stroke survivors and their caregivers must remember the continued impact of the stroke on both health-related quality of life and psychological well-being. Both stroke survivors and caregivers should be assessed for depression, burden, and other indicators of distress.
The combination of loss, prolonged distress and depression, and physical demands of caregiving can result in caregiver burden and decreased caregiver quality of life (Visser-Meily, Post, Schepers, & Lindeman, 2005). A study of stroke survivors and caregivers at 3 months and 1 year poststroke found caregiver burden to be inversely correlated with caregiver quality of life and positively correlated with increased patient disability, anxiety. and depression (McCullagh, Brigstocke, Donaldson, & Kalra, 2005). The cross-sectional study of caregivers of Japanese stroke survivors mentioned above also found increased caregiver burden to be associated with decreased HRQOL, especially mental health. Although 22% of these caregivers had been in their caregiving role for greater than 5 years, the majority (57.9%) of these caregivers had been providing care for less than 2 years (Morimoto et al., 2003). Although studies have shown an association between caregiver burden and HRQOL (McCullagh et al., 2005; Morimoto et al., 2003), these studies have not been longitudinal studies of caregiver burden and HRQOL greater than 2 years poststroke.
Although caregiving can be stressful, it can also be rewarding for the caregiver and care receiver. One positive aspect of the caregiving relationship, mutuality, is the shared pleasure that the caregiver and care receiver derive from the caregiving relationship (Archbold, Stewart, Greenlick, & Harvath, 1990). Increased mutuality has been found to be positively associated with improved caregiver- and patient-reported outcomes (Archbold et al., 1990; Kneeshaw, Considine, & Jennings, 1999; Lyons, Sayer, Archbold, Hornbrook, & Stewart, 2007), whereas lower mutuality has been related to negative caregiving outcomes (Halm & Bakas, 2007). Little research has been done on the association between mutuality and HRQOL. In a study of persons with Parkinson disease and their spousal caregivers, increased mutuality was associated with increased mental health quality of life, as measured by the SF-12, of caregivers. No association was found for mutuality and physical quality of life for caregivers of persons with Parkinson disease (Tanji et al., 2008). Mutuality has also been associated with both stroke survivors’ and their spousal caregivers’ life satisfaction (Ostwald, Godwin, & Cron, 2009).
Because mortality rates from stroke are declining, individuals are increasingly likely to live with serious disability, which can greatly impact their well-being (Clarke, Marshall, Black, & Colantonio, 2002), including their HRQOL, depression, burden, and mutuality. Research on the caregiving process has shown that many factors influence HRQOL for both the stroke survivors and the family caregivers. The purpose of this study was to measure HRQOL and its related determinants in long-term stroke survivors and their spousal caregivers who were more than 2 years poststroke.
This study evaluated HRQOL in a sample of long-term stroke survivors and caregivers who had previously completed an interventional study referred to as Committed to Assisting with Recovery after Stroke (CAReS; Sharon K. Ostwald, PI, R01NR05316). The CAReS study was an intervention that provided stroke survivors and their spousal caregivers with education, skills training, counseling, and referrals to community agencies. It enrolled 159 stroke survivors and their spousal caregivers from 2001 to 2005; CAReS study participants were followed for a 1-year period after the stroke survivor was discharged from an inpatient setting. Stroke survivors who participated in the CAReS study had to be at least 50 years, have a diagnosis of stroke, and had to be discharged home with a spouse or committed partner. The couple had to live within 50 miles of the Texas Medical Center, speak English, and be able to be reached by telephone. Neither member of the couple could have a major illness that greatly impacted their life (i.e., dementia, advanced cancer, hepatic or renal failure, or fractured lower extremity) or a life expectancy of 6 months or less. The CAReS study was approved by the university’s institutional review board and by the institutional review board of the facilities from which the participants were recruited.
The CAReS participants were eligible to participate in this study if they had completed 12 months of the CAReS study and if both members of the couple were still living in the home. Persons meeting the inclusion criteria were sent a letter explaining the study and asking if they were interested in participating. Follow-up phone calls were conducted to assess interest. If the couple was interested in participating in the study, the project coordinator scheduled an in-person interview. Signed informed consent was obtained before data collection.
Data were collected at one time point (which was greater than 2 years poststroke) in the couple’s home by a trained data collector. Data were entered into a database and double checked for accuracy. Changes in either the stroke survivor’s or caregiver’s health information were updated at the time of data collection. Data collected for this study were then merged with data collected in the CAReS study. The following instruments were used to measure the dyad’s HRQOL and related outcomes.
The Short Form Health Survey (SF- 36) questionnaire was used to measure the HRQOL of both the stroke survivor and the caregiver. Widely used in studies on disease burden and illness, the SF-36 was created to assess health status in clinical settings and health research studies (Ware & Sherbourne, 1992). The 36-item survey measures eight concepts including limitations in physical activities because of health issues, limitations in social activities because of emotional or physical issues, limitations in normal role activities because of physical health issues, bodily pain, general mental health (well-being and psychological distress), limitations in normal role activities because of emotional problems, vitality (fatigue and energy), and general health perceptions. The eight concepts form two summary measures: physical and mental health. Respondents score each item on either a 3- or 5-point Likert-type scale. Reliability estimates from numerous studies have shown the SF-36 to have high validity and reliability (Ware, 2010).
The Stroke Impact Scale (SIS) version 3.0 (Duncan, Bode, Min Lai, & Perera, 2003) was used to measure stroke-specific quality of life among the stroke survivors in the study. Developed to assess changes over time in disabilities, handicaps, and impairments, the 59-item assessment has eight domains: mobility (9), memory and thinking (7), emotion (9), communication (7), social participation (8), instrumental and physical activities of daily living (10), strength (4), and hand function (5). Individuals respond on a 5-point Likert-type scale. Three items have reverse scoring. Domains are scored by dividing the difference of the actual raw score and the lowest possible score by the possible raw score range. A higher score indicates better reported HRQOL. The SIS has been found to be a valid and reliable instrument (Duncan et al., 2003).
The Geriatric Depression Scale (GDS) short-form, used to assess symptoms of depression for both members of the couple, is a 15-question survey developed first by Yesavage and colleagues (1983) to measure depression in the elderly population. Questions are answered with a “yes” or “no”; five of the questions have reverse scoring. A reported score of 0–4 indicates normal mental status, 5–8 denotes mild depression, 9–11 denotes moderate depression, and 12–15 denotes severe depression. Testing showed that the GDS has 89% specificity and 92% sensitivity, and a validation study showed that both the long (30-question) and short form of the GDS were able to differentiate depressed from nondepressed adults with a high correlation score (r = .84, p < .001; Sheikh & Yesavage, 1986).
Mutuality is defined as the ability that caregivers have to find gratification when providing care and to feel reciprocated emotion or appreciation by the care receiver. Mutuality was assessed for both the stroke survivor and caregiver using the Mutuality Scale (Archbold et al., 1990). The questionnaire was part of the Family Caregiving Inventory and has 15-items on a 5-point Likert scale with a score range from 0 to 60. A higher score indicates a more positive relationship between the caregiver and care receiver. High validity and reliability greater than .90 has been reported when tested during two different time measurements (Archbold et al., 1990).
The Zarit Burden interview (ZBI) is one of the most commonly used questionnaires to assess burden among caregivers of older, cognitively impaired adults. The 22-item questionnaire is a revision of the original 29-item survey. Respondents answer questions on a 4-point Likert-type scale. Scoring on the ZBI 22-item version ranges from 0 to 88. Those with a score of 0–21 implied little or no burden, 21–40 implied mild to moderate burden, 41–60 implied moderate to severe burden, and 61–88 implied severe burden (Zarit, Orr, & Zarit, 1985). The ZBI 22-item questionnaire has been reported as having good reliability (Cronbach’s α = 0.88; Bédard et al., 2001).
Descriptive statistics were generated to check for potential errors and to examine the distribution of the instrument scores. Descriptive and inferential statistics were computed on participants’ demographic, HRQOL and associated variables to describe characteristics of the study sample. Time from stroke was calculated as the difference in the date of data collection in this study and baseline visit of the parent study. Level of significance for all statistical tests was set at .05.
The mean scores for long-term stroke survivors and spousal caregivers on the physical component summary and mental component summary of the SF-36 were compared with normative means published in the SF-36 scoring manual (Ware, Kosinski, & Dewey, 2000). The one-sample t test was used to compare the stroke survivors’ mean scores to normative means for the age group of 65–74 years, the predominant age group for stroke survivors in this study. Mean scores for the spousal caregivers were also compared with normative means with the one-sample t test. Normative scores for the age group of 55–64 years were used for the latter comparison, as this was the predominant age group for the caregivers in this study.
Repeated measures analysis was used to determine participants’ change over time on the SIS, GDS, mutuality, and burden scales. Specifically, linear mixed models (Brown & Prescott, 2006) were used to analyze the change in scale/subscale scores over time, with one model developed for each scale/subscale. The “days since stroke” variable was included in the models as a covariate to assess its effects on the change in the above mentioned variables over time.
Multiple linear regression (Kleinbaum, Kupper, & Muller, 1988) was used to analyze the relationship of participants’ HRQOL in this study to depression, mutuality, number of illnesses, age, ethnicity, and SIS. Separate models were analyzed using physical component summary and mental component summary scores on the SF-36 as dependent variables.
Thirty couples were interviewed for this study. Most stroke survivors in this study were men (80%, n = 24; Table 1). The mean age was 70.8 and 64.9 years for stroke survivors and caregivers, respectively. Approximately one third of the sample was an ethnic minority as represented by African American (15%) and Hispanic (15%) individuals. The average number of years since stroke was 4.68 (SD = 0.91, range = 2.95–6.29).
Caregivers and stroke survivors were both found to have significant changes in health-related outcomes over time (Table 2). Both caregivers and stroke survivors had significant changes in depression from baseline to an average of 4.68 years poststroke. Among stroke survivors, depression was found to decrease from baseline to 12 months (p = .043) but was found to increase from 12 months to the end of follow-up (p = .003). Caregivers’ depression decreased from baseline to all time points (p = .015). Stroke survivors’ mutuality showed no statistically significant change over time, whereas caregivers’ mutuality approached statistical significance and lessened over time (p = .056). Caregivers’ burden did not significantly change over time.
Long-term stroke survivors had significantly lower scores than the age-matched community-dwelling general population using the SF-36 (Table 3), a generic HRQOL measure. Stroke survivors reported significantly lower scores on the domains of physical functioning, role physical, general health, social functioning, and role emotional as well as on both the physical and mental summary scales. Conversely, for caregiver physical and mental HRQOL, no statistically significant differences were seen between the age-matched, community-dwelling general population and spousal caregivers.
Regarding stroke-specific quality of life, stroke survivors had significant decreases from baseline to the end of follow-up on the SIS subscales of emotion (p = .043) and memory (p = .017) but had significant increases on the SIS subscales of physical (p < .0001) and social participation (p = .003). However, stroke survivors’ HRQOL showed statistically significant decreases between 12 months and end of follow-up on all SIS subscales (physical: p = .024, communication: p = .001, emotion: p = .003, memory: p < .0001, and social participation: p = .001; Table 2, Figure 1).
The multiple linear regression analysis showed illness, age, and depression to be associated with generic HRQOL (as measured by the SF-36). For caregivers, increased number of illnesses and older age were associated with lower physical HRQOL score (F = 7.30, p = .004). Higher depression was associated with lower mental HRQOL score for both caregivers and stroke survivors (F = 10.97, p = .003 and F = 7.65, p = .011, respectively).
Our study found stroke survivors to have significant changes over time in their HRQOL. Similar to those in the Aukland Stroke Study (Hackett et al., 2000), stroke survivors reported lower generic HRQOL than age-matched controls on all domains of the SF-36 other than bodily pain, vitality, and mental health. Although the generic HRQOL reported on stroke survivors in the South London Stroke Registry remained relatively stable on the HRQOL physical domain and varied over time on the HRQOL mental domain (Wolfe et al., 2011), our study found the disease-specific HRQOL (SIS) scores for the stroke survivor to overall trend downwards for emotion and memory but to increase overall in physical and social participation. These overall trends capture the trajectory from baseline to the end of follow-up. However, when the stroke-specific HRQOL was examined from 12 months poststroke to the end of follow-up, stroke survivors were found to have significant decreases in all domains (emotion, communication, memory, physical, and social participation). This indicates that the stroke survivors’ specific HRQOL worsened after the first-year poststroke.
Caregivers had no significant differences in generic HRQOL when compared with age-matched controls. This is incongruent with the findings reported by McPherson and colleagues (2011) who reported that Canadian partner caregivers of stroke survivors had lower HQROL on all domains of the SF-36 as compared with the normative population. Perhaps, this is because of the differences in time from stroke; McPherson and colleagues reported their caregivers to be an average of 2.6 years from the stroke event, whereas the caregivers in this study were an average of 4.8 years poststroke.
Caregivers and stroke survivors also had significant changes overtime in their HRQOL-related outcomes. Caregivers’ depression decreased over time, whereas stroke survivors’ depression decreased from baseline to 12 months but then increased after 12 months. The continued presence of stroke survivor depression is congruent with previously reported studies (Hackett et al., 2005; van de Port et al., 2007). Stroke survivors’ perception of the caregiving relationship (mutuality) did not change over time, but caregivers’ mutuality did trend toward getting worse over time. In addition, caregiver burden did not significantly change over time; this is notable because it shows that caregivers had the same amount of burden, on average, at baseline as they did years after their loved one’s stroke. Despite the continued presence of caregiver burden and their worsening perception of the caregiving relationship, caregivers’ depression decreased over time.
This study does have limitations. First, as this study had a small sample size, caution must be used when applying these findings; generalizability is limited to older, predominately male stroke survivors and their spousal caregivers in Southeast Texas. In addition, age-associated changes may account for some of the negative findings, such as increased depression (Mirowsky & Ross, 1992) at the later time point for stroke survivors or the association between increased illness and lower physical HRQOL among caregivers. Also, because the inclusion criteria for both the parent study and this study required stroke survivors to be living in their own home during the study, persons who were sicker and may have possibly had decreased quality of life were excluded. Although this study was able to measure the change in HRQOL for stroke survivors over time and the HRQOL-related outcomes of caregivers over time, we were unable to report on the change in HRQOL of caregivers over time.
Despite these limitations, this study has important implications. Both stroke survivors and their caregivers continue to experience negative health-related outcomes for many years after the initial stroke; some of these outcomes even worsen over time. This study highlights the need for ongoing psychological and medical evaluation for both long-term stroke survivors and their caregivers. Although no significant differences were seen with spousal caregivers in terms of HRQOL in this study, additional study is necessary in that caring for stroke survivors with continued poor HRQOL may impact other indicators of mental and physical health in this population. As such, large longitudinal studies and the development and testing of targeted behavioral and medical interventions for stroke survivors and their caregivers are warranted.
Nurses caring for long-term stroke survivors and their caregivers should be aware of the continued impact of the stroke on an individual’s HRQOL and related psychological well-being. Nurses should assess both stroke survivors and their caregivers for signs of depression, burden, and other indicators of psychological distress and make appropriate mental health referrals when necessary. This study also highlights the need for nurses, practicing in a variety of acute and chronic healthcare settings, to educate stroke survivors and their caregivers about signs and symptoms of depression and burden and to provide them with information regarding helpful and accessible community resources.
Stroke often results in serious physical, cognitive, and emotional disability for survivors as well as greatly impacting their caregivers. Research has most often focused on the acute and rehabilitative aspects of healthcare after a stroke. In comparison, very little longitudinal research has been conducted to understand how stroke impacts a survivor’s life long term. Research is needed to elucidate the types of interventions and the best intervals of their delivery to improve the survivor’s quality of life and ability to live a productive life in the community. In addition, even less longitudinal research exists on the long-term impact of caregiving on the spouses and family members of stroke survivors. Little attention has been given to what correlates with a high quality of life, especially for spousal caregivers, and what interventions might help to avoid caregiver burnout over a long caregiving career. Further study is necessary so that effective, long-term interventions can be developed for both stroke survivors and their caregivers.
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Keywords: health-related quality of life; long-term survivors of stroke; spousal caregivers; stroke
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