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 α=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.

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.

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.

Background: A core outcome set (COS; an agreed, minimum set of outcomes) was needed to address the heterogeneous measurement of outcomes in aphasia treatment research and to facilitate the production of transparent, meaningful, and efficient outcome data. Objective: The Research Outcome Measurement in Aphasia (ROMA) consensus statement provides evidence-based recommendations for the measurement of outcomes for adults with post-stroke aphasia within phases I–IV aphasia treatment studies. Methods: This statement was informed by a four-year program of research, which comprised investigation of stakeholder-important outcomes using consensus processes, a scoping review of aphasia outcome measurement instruments, and an international consensus meeting. This paper provides an overview of this process and presents the results and recommendations arising from the international consensus meeting. Results: Five essential outcome constructs were identified: Language, communication, patient-reported satisfaction with treatment and impact of treatment, emotional wellbeing, and quality of life. Consensus was reached for the following measurement instruments: Language: The Western Aphasia Battery Revised (WAB-R) (74% consensus); emotional wellbeing: General Health Questionnaire (GHQ)-12 (83% consensus); quality of life: Stroke and Aphasia Quality of Life Scale (SAQOL-39) (96% consensus). Consensus was unable to be reached for measures of communication (where multiple measures exist) or patient-reported satisfaction with treatment or impact of treatment (where no measures exist). Discussion: Harmonization of the ROMA COS with other core outcome initiatives in stroke rehabilitation is discussed. Ongoing research and consensus processes are outlined. Conclusion: The WAB-R, GHQ-12, and SAQOL-39 are recommended to be routinely included within phases I–IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the German Society for Aphasia Research and Therapy, and the Royal College of Speech Language Therapists.

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.