Katerina Hilari

Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39): Evaluation of Acceptability, Reliability, and Validity

Background and Purpose— Health-related quality of life (HRQL) is a key outcome in stroke clinical trials. Stroke-specific HRQL scales (eg, SS-QOL, SIS) have generally been developed with samples of stroke survivors that exclude people with aphasia. We adapted the SS-QOL for use with people with aphasia to produce the Stroke and Aphasia Quality of Life Scale (SAQOL). We report results from the psychometric evaluation of the initial 53-item SAQOL and the item-reduced SAQOL-39. Methods— We studied 95 people with long-term aphasia to evaluate the acceptability, reliability, and validity of the SAQOL and SAQOL-39 using standard psychometric methods. Results— A total of 83 of 95 (87%) were able to complete the SAQOL by self-report; their results are reported here. Results supported the reliability and validity of the overall score on the 53-item SAQOL, but there was little support for hypothesized subdomains. Using factor analysis, we derived a shorter version (SAQOL-39) that identified 4 subdomains (physical, psychosocial, communication, and energy). The SAQOL-39 demonstrated good acceptability, internal consistency (Cronbach’s &agr;=0.74 to 0.94), test-retest reliability (intraclass correlation coefficient=0.89 to 0.98), and construct validity (corrected domain–total correlations, r =0.38 to 0.58; convergent, r =0.55 to 0.67; discriminant, r =0.02 to 0.27 validity). Conclusions— The SAQOL-39 is an acceptable, reliable, and valid measure of HRQL in people with long-term aphasia. Further testing is needed to evaluate the responsiveness of the SAQOL-39 and to investigate its usefulness in evaluative research and routine clinical practice.

The impact of stroke: are people with aphasia different to those without?

Purpose. Stroke rehabilitation programmes aim to improve functional outcomes and quality of life. This study explored long-term outcomes in a cohort of people admitted to two acute stroke units with stroke. Comparisons were drawn between people with aphasia (PWA) and people without aphasia. Methods. People admitted to hospital with a first stroke were assessed at 2-weeks, 3-months and 6-months post-stroke. Measures included: the Barthel Index for Activities of Daily Living (ADL), the Frenchay Aphasia Screening Test, the General Health Questionnaire-12 for emotional well-being and the Stroke and Aphasia Quality of Life Scale-39g. Extended ADL and social support were also measured at 3 and 6 months, with the Frenchay Activities Index and the Social Support Survey, respectively. Results. Of 126 eligible participants, 96(76%) took part and 87(69%) were able to self-report. Self-report data are reported here. Although outcomes improved significantly across time, at 6 months people continued to experience substantial functional limitations (16% aphasic; 32% dependent on basic ADL); participation limitations (79% ≤30 on the FAI); high psychological distress (45%) and compromised quality of life (54% ≤4 on the SAQOL-39g). Levels of social support remained relatively stable. Though at 3-months post-stroke PWA were significantly more likely to experience high psychological distress (93% versus 50% for those without), across time, there were no significant differences between PWA and those without on psychological distress and also ADL and social support. There were, however, significant differences on extended ADL (F(1,68) = 7.80, p < 0.01) and quality of life (F(1,69) = 6.30, p < 0.05). Conclusion. PWA participated in fewer activities and reported worse quality of life after stroke than people without aphasia, even when their physical abilities, well-being and social support were comparable. Implications for clinical practice and future research are discussed.

Social support in people with chronic aphasia

Background & Aims : Stroke and aphasia can have a profound impact on peoples social activities, and family and social relationships. This study looked at patterns of social support in people with chronic aphasia following stroke. It examined the relationship between social support and quality of life, exploring which aspects of social support (social network versus perceived social support) were most associated with health-related quality of life (HRQL). Methods & Procedures : A cross-sectional interview-based survey study was conducted. A cluster-sampling framework was used to recruit participants with chronic aphasia following stroke (> 1 year) from three different sites in the south-east of England. Measures included the Stroke and Aphasia Quality of Life Scale-39 item version (SAQOL-39), the MOS Social Support Survey (SSS), and a social network questionnaire. Descriptive statistics, correlation, t -tests, and ANOVAs were used as appropriate. Outcomes & Results : The results of those able to self-report (83 out of 95 participants, 87%) are reported here. In terms of social networks, the mode of the size of network was 4. Size of network was associated with HRQL for women only. Most participants (71%) reported they had the same amount of contact with their children following the stroke, while 64% reported they saw their friends less. Those who had the same level of contact with their family as before the stroke had the highest HRQL scores; those who saw them either less or more than before the stroke had lower HRQL. In terms of perceived social support, the SSS scores were negatively skewed with a mean (SD) of 3.69 (.95), suggesting that participants felt overall well supported. Two types of support were significantly correlated with HRQL: social companionship and informational support. Clinical implications : Therapy services for people with aphasia could consider ways to enhance social companionship and informational support as this may positively impact on HRQL. Implications could include complementing and supporting existing social networks, and facilitating access to information and social participation.

Psychological distress after stroke and aphasia: the first six months

Objective: We explored the factors that predicted psychological distress in the first six months post stroke in a sample including people with aphasia. Design: Prospective longitudinal observational study. Setting and subjects: Participants with a first stroke from two acute stroke units were assessed while still in hospital (baseline) and at three and six months post stroke. Main measures: Distress was assessed with the General Health Questionnaire-12. Other measures included: NIH Stroke Scale, Barthel Index, Frenchay Aphasia Screening Test, Frenchay Activities Index, MOS Social Support Scale and social network indicators. Logistic regression was used to identify predictors of distress at each stage post stroke; and to determine what baseline factors predicted distress at six months. Results: Eighty-seven participants were able to self-report on measures used, of whom 32 (37%) had aphasia. 71 (82%) were seen at six months, including 11 (16%) with aphasia. Predictors of distress were: stroke severity at baseline; low social support at three months; and loneliness and low satisfaction with social network at six months. The baseline factors that predicted distress at six months were psychological distress, loneliness and low satisfaction with social network (Nagelkerke R2 = 0.49). Aphasia was not a predictor of distress at any time point. Yet, at three months post stroke 93% of those with aphasia experienced high distress, as opposed to 50% of those without aphasia (χ2 (1) = 8.61, P<0.01). Conclusions: Factors contributing to distress after stroke vary across time. Loneliness and low satisfaction with one’s social network are particularly important and contribute to long-term psychological distress.

Proxy and self-report agreement on the Stroke and Aphasia Quality of Life Scale-39

Background and purpose: Health related quality of life outcomes are increasingly used to measure the effectiveness of stroke interventions. People with severe aphasia after stroke may be unable to self-report on such measures, necessitating the use of proxy respondents. We explored the level of agreement between people with aphasia (PWA) and their proxies on the Stroke and Aphasia Quality of Life Scale (SAQOL-39) and whether this agreement is influenced by demographic variables and proxy levels of depression and carer strain. Methods: People with chronic aphasia (⩾6 months post stroke) were recruited through the UK national charity for PWA. They were interviewed on the SAQOL-39 and their nominated proxies were interviewed on the SAQOL-39, the General Health Questionnaire and the Caregiver Strain Index. Proxy respondents had to be ⩾18 years of age, see the person with aphasia at least twice a week and have no known severe mental health problems or cognitive decline. Results: 50 of 55 eligible pairs (91%) took part in the study. Proxies rated PWA as more severely affected than PWA rated themselves. The SDs of the difference scores were large and the difference was significant for three of the four SAQOL-39 domains and the overall mean (p⩽0.01). However, the bias as indicated by effect sizes was small to moderate (0.2–0.5). The strength of the agreement was excellent for the overall SAQOL-39 and the physical domain (intra-class correlation coefficient ICC 0.8), good for the psychosocial and communication domains (0.7) and fair for the energy domain (0.5). Demographic variables and proxy’s mood and carer strain did not affect the level of agreement. Conclusions: For group comparisons, proxy respondents who are in frequent contact with people with chronic aphasia can reliably report on their health related quality of life, using the SAQOL-39. Although there are significant differences between PWA and proxy responses, the magnitude of this difference is small to moderate.

Measuring quality of life in people with aphasia: The Stroke Specific Quality of Life Scale

Assessing health related quality of life (HRQOL) in people with communication disabilities is a challenge in health related research. Materials used to assess HRQOL are often linguistically complex and their mode of administration usually does not facilitate people with communication disabilities to give their experiences. We are currently running a medium scale study (80 participants) which aims to explore the HRQOL of people with long-term aphasia and to assess the psychometric properties and the acceptability of the Stroke Specific Quality of Life Scale (SS-QOL) (Williams et al. 1999) as a single measure for the assessment of HRQOL in this population. Here the initial stages of modifying the SS-QOL for use with people with aphasia will be presented. We will concentrate on the process of making the scale communicatively accessible to people with aphasia and increasing its content validity with this population group.

Predictors of health-related quality of life (HRQL) in people with chronic aphasia

Background: In recent years, quality of life measures have been used increasingly to evaluate the effectiveness of services or interventions. For people with chronic disabilities, research has focused on identifying the main predictors of their health-related quality of life (HRQL), in order to address the issue of how to meet their needs in rehabilitation in a more holistic way. Aims: This study assessed the main predictors of HRQL in people with chronic aphasia following stroke. We investigated the relationship between HRQL and various demographic and stroke-related variables and other variables that have been associated with HRQL in stroke survivors (e.g., emotional distress, daily activities, social support). Methods: A cross-sectional design was adopted. A cluster sampling framework was used to recruit participants with chronic aphasia (> 1 year) from three different sites. Questionnaires and assessments on the different variables were administered to all participants by a speech and language therapist, in an interview format. Multiple regression analysis was used to assess what were the main predictors of HRQL in people with aphasia. Results: Of 95 participants, 83 (87%) were able to self-report on all the assessments. Emotional distress, involvement in home and outdoors activities, extent of communication disability, and number of comorbid conditions explained 52% of the variance in HRQL (adjusted R 2 = .52). Stroke type (infarct vs haemorrhage), time post-onset, and demographic variables (gender, ethnicity, marital status, employment status, and socioeconomic status) were not significantly associated with HRQL in these participants. Conclusions: Increased distress, reduced involvement in activities, increased communication disability, and comorbidity predict poorer HRQL in people with chronic aphasia after stroke. Service providers need to take these factors into account when designing intervention programmes.

Health‐related quality of life in people with severe aphasia

BACKGROUND Health-related quality of life (HRQL) measures are increasingly used to help us understand the impact of disease or disability on a persons life and to measure the effectiveness of interventions. A small number of studies have looked at perceived HRQL in people with mild or moderate aphasia. They report that reduced HRQL is associated with low psychological well-being and depression, reduced activity levels and high levels of communication disability. Still, very little is known about the quality of life of people with severe aphasia. AIMS This study aimed to evaluate the HRQL of people with severe aphasia as rated by their proxy respondents. To increase our understanding of these proxy evaluations, the findings were compared with those of two other studies of HRQL in people with moderate or mild aphasia, using proxy and self-report respondents. METHODS & PROCEDURES A questionnaire-based cross-sectional survey was carried out where proxies of people with severe aphasia reported on their HRQL. The people with severe aphasia who took part in this study were part of a larger cohort of people with aphasia who were able to self-report on their HRQL. Aphasia was assessed with the American Speech and Hearing Association Functional Assessment of Communication Skills for Adults (ASHA-FACS) and the Frenchay Aphasia Screening Test (FAST) and HRQL with the Stroke and Aphasia Quality of Life (SAQOL) scale (proxy-reported). SAQOL-39 scores were derived from the SAQOL. RESULTS & RESULTS: People with severe aphasias quality of life, as measured by their proxies (n = 12), was low and more than one standard deviation below that of the standardization sample of the SAQOL. The overall mean score for the SAQOL-39 and the means for its physical and communication domains were below the 20th centile. They were also significantly lower that those of the comparison studies of self-reports (n = 83) and proxy ratings (n = 50) of people with mild or moderate aphasia (p<or=0.003). In the comparison studies there were no significant differences between the self-report and proxy ratings of people with mild or moderate aphasia. CONCLUSIONS & IMPLICATIONS This small study suggests that the HRQL of people with severe aphasia, as reported by their proxies, is severely compromised. Further research, using a wide range of methodologies, is needed in order to address the challenge of understanding better the quality of life of people with severe aphasia.

Psychometric properties of the Stroke and Aphasia Quality of Life Scale (SAQOL-39) in a generic stroke population

Background: We previously developed the Stroke and Aphasia Quality of Life scale (SAQOL-39) and tested it with people with chronic aphasia. A scale allowing comparisons of quality of life between people with versus without aphasia post-stroke would be of value to clinicians. Objectives: To evaluate the psychometrics of the SAQOL-39 in a generic stroke sample. Should this process result in a generic-stroke version of the scale (SAQOL-39g), a further aim is to compare the latter and the SAQOL-39 as tested in chronic aphasia. Design and subjects: Repeated measures psychometric study, evaluating internal consistency, test—retest reliability, construct validity and responsiveness to change. People admitted to hospital with a first stroke were assessed two weeks, three months and six months post stroke. Measures: SAQOL-39, National Institutes of Health Stroke Scale, Barthel, Frenchay Aphasia Screening Test, General Health Questionnaire-12 and Frenchay Activities Index. Results: Of 126 eligible participants, 96 (76%) participated and 87 (69%) were able to self-report and are presented here. Testing the SAQOL-39 in generic stroke resulted in the SAQOL-39g, which has the same items as the SAQOL-39 but three domains: physical, psychosocial, communication. The SAQOL-39g showed good internal consistency (α = 0.95 overall score, 0.92—0.95 domains), test—retest reliability (interclass correlation (ICC) = 0.96 overall, 0.92—0.98 domains), convergent (r = 0.36—0.70 overall, 0.47—0.78 domains) and discriminant validity (r = 0.26 overall, 0.03—0.40 domains). It differentiated people by stroke severity and visual analogue scale (VAS)-defined quality of life. Moderate changes (d = 0.35—0.49; standardized response mean (SRM) = 0.29—0.53) from two weeks to six months supported responsiveness. Conclusions: The SAQOL-39g demonstrated good reliability, validity and responsiveness to change. It can be used to evaluate quality of life in people with and without aphasia post stroke.

A systematic review of the impact of stroke on social support and social networks: associated factors and patterns of change

Objective: Identify what factors are associated with functional social support and social network post stroke; explore stroke survivors’ perspectives on what changes occur and how they are perceived. Data sources: The following electronic databases were systematically searched up to May 2015: Academic Search Complete; CINAHL Plus; E-journals; Health Policy Reference Centre; MEDLINE; PsycARTICLES; PsycINFO; and SocINDEX. Review methods: PRISMA guidelines were followed in the conduct and reporting of this review. All included studies were critically appraised using the Critical Appraisal Skills Program tools. Meta-ethnographic techniques were used to integrate findings from the qualitative studies. Given the heterogeneous nature of the quantitative studies, data synthesis was narrative. Results: Seventy research reports met the eligibility criteria: 22 qualitative and 48 quantitative reporting on 4,816 stroke survivors. The qualitative studies described a contraction of the social network, with non-kin contact being vulnerable. Although family were more robust network members, significant strain was observed within the family unit. In the quantitative studies, poor functional social support was associated with depression (13/14 studies), reduced quality of life (6/6 studies) and worse physical recovery (2/2 studies). Reduced social network was associated with depression (7/8 studies), severity of disability (2/2 studies) and aphasia (2/2 studies). Although most indicators of social network reduced post stroke (for example, contact with friends, 5/5 studies), the perception of feeling supported remained relatively stable (4/4 studies). Conclusion: Following a stroke non-kin contact is vulnerable, strain is observed within the family unit, and poor social support is associated with depressive symptoms.