Adjustment with aphasia after stroke: study protocol for a pilot feasibility randomised controlled trial for SUpporting wellbeing through PEeR Befriending (SUPERB)

Background: Despite the high prevalence of mood problems after stroke, evidence on effective interventions particularly for those with aphasia is limited. There is a pressing need to systematically evaluate interventions aiming to improve wellbeing for people with stroke and aphasia. This study aims to evaluate the feasibility of a peer-befriending intervention. Methods/design: SUPERB is a single blind, parallel group feasibility trial of peer befriending for people with aphasia post-stroke and low levels of psychological distress. The trial includes a nested qualitative study and pilot economic evaluation and it compares usual care (n = 30) with usual care + peer befriending (n = 30). Feasibility outcomes include proportion screened who meet criteria, proportion who consent, rate of consent, number of missing/incomplete data on outcome measures, attrition rate at follow-up, potential value of conducting main trial using value of information analysis (economic evaluation), description of usual care, and treatment fidelity of peer befriending. Assessments and outcome measures (mood, wellbeing, communication, and social participation) for participants and significant others will be administered at baseline, with outcome measures re-administered at 4 and 10 months post-randomisation. Peer befrienders will complete outcome measures before training and after they have completed two cycles of befriending. The qualitative study will use semi-structured interviews of purposively sampled participants (n = 20) and significant others (n = 10) from both arms of the trial, and all peer befrienders to explore the acceptability of procedures and experiences of care. The pilot economic evaluation will utilise the European Quality of life measure (EQ-5D-5 L) and a stroke-adapted version of the Client Service Receipt Inventory (CSRI). Discussion: This study will provide information on feasibility outcomes and an initial indication of whether peer befriending is a suitable intervention to explore further in a definitive phase III randomised controlled trial. Trial registration: ClinicalTrials.gov identifier NCT02947776, registered 28th October 2016

Quality of life after stroke: Evaluation of the Greek SAQOL-39g

Background/Aims: Stroke and aphasia rehabilitation aims to improve people’s quality of life. Yet, scales for measuring health-related quality of life in stroke typically exclude people with aphasia. They are also primarily available in English. An exception is the Stroke and Aphasia Quality of Life scale (SAQOL-39g). This scale has been tested with people with aphasia; it has been adapted for use in many countries including Greece. The aim of this study was to examine the psychometric properties of the Greek SAQOL-39g. Methods: An interview-based psychometric study was carried out. Participants completed: receptive sub-tests of Frenchay Aphasia Screening Test, Greek SAQOL-39g, General Health Questionnaire-12, Frenchay Activities Index, Montreal Cognitive Assessment and Barthel Index. Results: 86 people took part; 26 provided test-retest reliability data. The Greek SAQOL-39g demonstrated excellent acceptability (minimal missing data; no floor/ceiling effects), test-retest reliability (ICC= 0.96 scale, 0.83-0.99 domains) and internal consistency (Cronbach’s alpha 0.96 scale, 0.92-0.96 domains). There was strong evidence for convergent (r=0.53-0.80 scale; 0.54-0.89 domains) and discriminant validity (r=0.52 scale; 0.04-0.48 domains). Conclusion: The Greek SAQOL-39g is a valid and reliable scale. It is a promising measure for use in stroke and aphasia treatment prioritization, outcome measurement and service evaluation

Aphasia blog talk: How does stroke and aphasia affect a person’s social relationships?

Background: Stroke and aphasia can negatively affect a person’s ability to maintain healthy social relationships, both within the family and also with friends and the wider network. To date, this has been explored predominantly through qualitative interviews and questionnaires. Blogs written by people with aphasia constitute a novel source of data, comprised of people’s own voices on issues that are of concern to them. Aims: To explore the impact of stroke and aphasia on a person’s relationships with family, friends and the wider network through analysing blogs written by people with aphasia. Methods & Procedures: Blog search engines were used to identify blogs sustained by a sole author who had aphasia following a stroke, and which reflected on their social network. The data were analysed qualitatively using framework analysis. Outcomes & Results: The systematic search resulted in 10 relevant blogs. Participants were aged between 26 and 69 years old, lived in the community, were at least 1 year post stroke and included six women and four men. Aphasia was a consistent thread running through the blogs affecting conversations with all parts of a person’s network and impacting on participants’ sense of self. They found it more difficult to take part in family activities and described higher degrees of dependence and changed family dynamics. Contact with friends was reduced, partly due to communication and physical difficulties. While some participants became motivated to become members of groups post stroke, contact with the wider network sometimes diminished, in part because of loss of work and community activities. An additional factor impacting on social relationships was other people’s positive or negative reaction towards the person with aphasia. Finally, the blogs reflected on the importance of support they had received, both from close family and also from the wider community. Conclusions: This study found that social relationships played a crucial role in people’s lives following a stroke and aphasia. Nonetheless, family relationships, friendships and social exchanges within the wider social network were all substantially affected. Exploring this area through online narratives offered a rich and highly authentic source of data. The findings suggest that clinicians should incorporate social approaches in rehabilitation and consider ways to foster the maintenance of social networks. The use of social media by people with aphasia should be further explored, both as a therapeutic outlet and also as a way for people with aphasia to feel connected to a wider community

A Randomised Trial of Social Support Group Intervention for People with Aphasia: A Novel Application of Virtual Reality

About a third of strokes cause aphasia, or language loss, with profound consequences for the person’s social participation and quality of life. These problems may be mitigated by group social support. But this intervention is not available to all individuals. This study investigated whether it is feasible to deliver group social support to people with aphasia via a multi-user, virtual reality platform. It also explored the indicative effects of intervention and the costs. Intervention aimed to promote wellbeing and communicative success. It enabled participants to form new social connections and share experiences of living with aphasia. It comprised 14 sessions delivered over 6 months and was led by community based co-ordinators and volunteers. Feasibility measures comprised: recruitment and retention rates, compliance with intervention and assessment of treatment fidelity. Effects of intervention were explored using a waitlist randomised controlled design, with outcome measures of wellbeing, communication, social connectedness and quality of life. Two intervention groups were randomised to an immediate condition and two were randomised to a delayed condition. The main analysis explored scores on the measures between two time points, between which those in the immediate condition had received intervention, but those in the delayed group had not (yet). A comprehensive approach to economic data collection ensured that all costs of treatment delivery were recorded. Feasibility findings showed that the recruitment target was met (N = 34) and 85.3% (29/34) of participants completed intervention. All groups ran the 14 sessions as planned, and participants attended a mean of 11.4 sessions (s.d. 2.8), which was 81.6% of the intended dose. Fidelity checking showed minimal drift from the manualised intervention. No significant change was observed on any of the outcome measures, although the study was not powered to detect these. Costs varied across the four groups, from £7,483 - £12,562 British Pounds Sterling ($10,972 -$18,419 US dollars), depending on travel costs, the relative contributions of volunteers and the number of hardware loans that were needed. The results suggest that a larger trial of remote group support, using virtual reality, would be merited. However the treatment content and regime, and the selection of outcome measures should be reviewed before conducting the trial

Factors affecting swallowing outcomes after total laryngectomy: Participant self-report using the swallowing outcomes after laryngectomy questionnaire

BACKGROUND: Little is known about what factors affect patient-reported swallowing outcome after total laryngectomy. We explored whether patient demographics, surgical variables, use of adjuvant treatment, and time since surgery were associated with patient-reported swallowing outcome. METHODS: Cross-sectional study of laryngectomees in eight UK hospitals. Demographic, treatment, and surgical variables were drawn from medical notes. The swallowing outcomes after laryngectomy (SOAL) questionnaire captured perceived swallowing outcome. RESULTS: Two hundred and twenty one participants had complete data on treatment-related variables. In regression analysis, having a free jejunum flap repair and requiring chemoradiation were the only two variables that added significantly to the model of worse self-reported swallowing outcome (R2 adjusted = .23, P < .001). CONCLUSION: The SOAL is a sensitive measure of self-reported swallowing outcome after laryngectomy. Type of surgical closure and the type of additional treatment influenced the swallowing outcome reported by patients. Changes in perceived swallowing function need to be routinely evaluated to inform clinical decision-making and intervention

The effects of a dialogue-based intervention to promote psychosocial well-being after stroke: a randomized controlled trial

Objective: To evaluate the effect of a dialogue-based intervention targeting psychosocial well-being at 12 months post-stroke. Design: Multicenter, prospective, randomized, assessor-blinded, controlled trial with two parallel groups. Setting: Community. Subjects: Three-hundred and twenty-two adults (⩾18 years) with stroke within the last four weeks were randomly allocated into intervention group (n = 166) or control group (n = 156). Interventions: The intervention group received a dialogue-based intervention to promote psychosocial well-being, comprising eight individual 1–1½ hour sessions delivered during the first six months post-stroke. Main measures: The primary outcome measure was the General Health Questionnaire-28 (GHQ-28). Secondary outcome measures included the Stroke and Aphasia Quality of Life Scale-39g, the Sense of Coherence scale, and the Yale Brown single-item questionnaire. Results: The mean (SD) age of the participants was 66.8 (12.1) years in the intervention group and 65.7 (13.3) years in the control group. At 12 months post-stroke, the mean (SE) GHQ-28 score was 20.6 (0.84) in the intervention group and 19.9 (0.85) in the control group. There were no between-group differences in psychosocial well-being at 12 months post-stroke (mean difference: −0.74, 95% confidence interval (CI): −3.08, 1.60). The secondary outcomes showed no statistically significant between-group difference in health-related quality of life, sense of coherence, or depression at 12 months. Conclusion: The results of this trial did not demonstrate lower levels of emotional distress and anxiety or higher levels of health-related quality of life in the intervention group (dialogue-based intervention) as compared to the control group (usual care) at 12 months post-stroke

A pilot economic evaluation of a feasibility trial for SUpporting wellbeing through PEeR-Befriending (SUPERB) for post-stroke aphasia

Objectives To explore the feasibility of a full economic evaluation of usual care plus peer-befriending versus usual care control, and potential cost-effectiveness of peer-befriending for people with aphasia. To report initial costs, ease of instruments’ completion and overall data completeness. Design Pilot economic evaluation within a feasibility randomised controlled trial Setting Community, England Participants People with post-stroke aphasia and low levels of psychological distress Intervention All participants received usual care; intervention participants received six peer-befriending visits between randomisation and four months Main measures Costs were collected on the stroke-adapted Client Service Receipt Inventory (CSRI) for health, social care and personal out-of-pocket expenditure arising from care for participants and carers at 4- and 10-months post-randomisation. Health gains and costs were reported using the General Health Questionnaire-12 and the EQ-5D-5L. Mean (CI) differences for costs and health gains were reported and uncertainty represented using non-parametric bootstrapping and cost-effectiveness acceptability curves. Results 56 participants were randomised. Mean age was 70.1 (SD 13.4). Most (n = 37, 66%) had mild and many (n = 14; 25%) severe aphasia. There was ≥94% completion of CSRI questions. Peer-befriending was higher in intervention arm (p < 0.01) but there were no significant differences in total costs between trial arms. Peer-befriending visits costed on average £57.24 (including training and supervision costs). The probability of peer-befriending being cost-effective ranged 39% to 66%. Conclusions Economic data can be collected from participants with post-stroke aphasia, indicating a full economic evaluation within a definitive trial is feasible. A larger study is needed to demonstrate further cost-effectiveness of peer-befriending

Preliminary Psychometric Analyses of Two Assessment Measures Quantifying Communicative and Social Activities: the COMACT and SOCACT

Background: There is a need for clinical tools that capture the real-life impact of aphasia (Simmons-Mackie, Threats & Kagan, 2005). This study reports on a psychometric investigation of two self-report tools: the Communicative Activities Checklist and the Social Activities Checklist (COMACT; SOCACT: Cruice, 2001), which assess the dimensions of communication activity and social participation in aphasia. Aims: (1) To investigate internal consistency, convergent and known validity of the COMACT and SOCACT; and (2) To investigate the impact of personal contextual factors: gender, age, years in education, linguistic ability and emotional health on communicative and social activities. Method: 30 participants with mild-moderate chronic aphasia (PWA: mean age 71 years, mean time post-onset 41 months, mean years in education 10.77) and 75 control neurologically healthy participants (NHP: mean age 74 years, mean years in education 13.18) completed the COMACT and SOCACT reporting how frequently they engaged in particular activities. The COMACT has 45 communication activities with sub-scales of Talking, Listening, Reading and Writing. The SOCACT contains 20 social activities with sub-scales of Leisure, Informal and Formal. Internal consistency (IC) was examined using Cronbach’s alpha (α). Correlations with published assessments, Western Aphasia Battery (WAB: Kertesz, 1982) and Communication Activities of Daily Living (CADL-2: Holland, Frattali & Fromm, 1999) were computed for COMACT only. Multiple regression models were examined for differences in participant (PWA vs. NHP) performance on COMACT and SOCACT. COMACT & SOCACT: psychometric investigation Results: Total COMACT IC was 0.83 (PWA), and 0.84 (NHP). Following deletion of four items, to further improve sub-scale ICs, total COMACT IC was 0.83 (PWA) and 0.86 (NHP). COMACT total score and WAB AQ were moderately correlated (r = 0.55). Total SOCACT IC was 0.58 (PWA) and 0.63 (NHP). Following single item deletion, total IC was 0.65 (PWA) and 0.64 (NHP). Statistical analysis revealed PWA, in comparison to NHP, participated in significantly fewer communication and social activities. Personal contextual factors impacted both groups differently; particular aspects were associated with communication activity (age and language severity) and social activity (age only). For NHP, ageing, emotional health and years in education were significant predictors of social and communication activity. Conclusion: This study finds the COMACT to be a reliable, valid measure of communication activity. The SOCACT had ‘questionable’ IC and requires further psychometric investigation. Both tools demonstrate known group validity. Relationships between impairment-level and personal contextual factors for communication activity and social participation are highlighted