Towards the Consistent Inclusion of People With Aphasia in Stroke Research Irrespective of Discipline

Shiggins, Ciara; Ryan, Brooke; O’Halloran, Robyn; Power, Emma; Bernhardt, Julie; Lindley, Richard I.; McGurk, Gordon; Hankey, Graeme J.; Rose, Miranda

doi:10.1016/j.apmr.2022.07.004

Cited by 16 publications

(6 citation statements)

References 52 publications

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“…The trial offered an important opportunity to capture the data from a population of survivors of stroke who are often excluded from participating in clinical trials. 22 Overall, it appeared that M-MAT was more favorable than CIAT-Plus when compared with usual care in terms of costs and QALYs. CIAT-Plus was likely to result in more QALYs, but at an additional cost when compared with usual care.…”

Section: Discussionmentioning

confidence: 97%

High-Intensity Aphasia Therapy Is Cost-Effective in People With Poststroke Aphasia: Evidence From the COMPARE Trial

Kim,

Rose,

Pierce

et al. 2024

Stroke

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Background: Evidence from systematic reviews confirms that speech and language interventions for people with aphasia during the chronic phase after stroke (>6 months) improve word retrieval, functional communication, and communication-related quality of life. However, there is limited evidence of their cost-effectiveness. We aimed to estimate the cost per quality-adjusted life year gained from 2 speech and language therapies compared with usual care in people with aphasia during the chronic phase (median, 2.9 years) after stroke. Methods: A 3-arm, randomized controlled trial compared constraint-induced aphasia therapy plus (CIAT-Plus) and multimodality aphasia therapy (M-MAT) with usual care in 216 people with chronic aphasia. Participants were administered a standardized questionnaire before intervention and at 12 weeks after the 2-week intervention/control period to ascertain health service utilization, employment changes, and informal caregiver burden. Unit prices from Australian sources were used to estimate costs in 2020. Quality-adjusted life years were estimated using responses to the EuroQol-5 Dimension-3 Level questionnaire. To test uncertainty around the differences in costs and outcomes between groups, bootstrapping was used with the cohorts resampled 1000 times. Results: Overall 201/216 participants were included (mean age, 63 years, 29% moderate or severe aphasia, 61 usual care, 70 CIAT-Plus, 70 M-MAT). There were no statistically significant differences in mean total costs ($13 797 usual care, $17 478 CIAT-Plus, $11 113 M-MAT) and quality-adjusted life years (0.19 usual care, 0.20 CIAT-Plus, 0.20 M-MAT) between groups. In bootstrapped analysis of CIAT-Plus, 21.5% of iterations were likely to result in better outcomes and be cost saving (dominant) compared with usual care. In contrast, 72.4% of iterations were more favorable for M-MAT than usual care. Conclusions: We observed that both treatments, but especially M-MAT, may result in better outcomes at an acceptable additional cost, or potentially with cost savings. These findings are relevant in advocating for the use of these therapies for chronic aphasia after stroke.

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Section: Discussionmentioning

confidence: 97%

High-Intensity Aphasia Therapy Is Cost-Effective in People With Poststroke Aphasia: Evidence From the COMPARE Trial

Kim,

Rose,

Pierce

et al. 2024

Stroke

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“…The aggregated data support prior reports of a general under-representation and/or reportage of people with aphasia in stroke trials. [1][2][3]19,20 This may have important implications for the external validity, effectiveness, and effective implementation of research findings, particularly those which may require adaptation in the context of aphasia. Service providers, policymakers, and researchers must appraise and recognize the inherent limitations of the evidence base accordingly.…”

Section: Discussionmentioning

confidence: 99%

Are People with Aphasia Included in Stroke Trials? A Systematic Review and Narrative Synthesis

Vaughan

Manning

2023

Clin Rehabil

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Objective To examine the proportion of people with aphasia (PwA) included and retained in randomised controlled trials (RCTs) of stroke interventions published in the previous 6 years, as well as aphasia-relevant eligibility criteria and inclusion/retention strategies. Data sources Comprehensive searching of Embase, PubMed and Medline (Ovid) for the period January 2016 – November 2022. Review methods RCTs examining stroke interventions targeting cognition, psychological wellbeing/health-related quality of life (HRQL), multidisciplinary rehabilitation, and self-management were included. Methodological quality was assessed using the Critical Appraisal Skills Programme (CASP) Randomised Controlled Trial checklist. Descriptive statistics were applied to extracted data, and results were reported narratively. Results Fifty-seven RCTs were included. These examined self-management (32%), physical (26%) psychological wellbeing/HRQL (18%), cognitive (14%), and multidisciplinary (11%) interventions. Of 7313 participants, 107 (1.5%) had aphasia and were included in three trials. About one-third did not report on aphasia (32%); over one quarter required functional communication (28%); one quarter excluded all aphasia (25%); and 14% excluded severe aphasia. No aphasia-specific inclusion/retention strategies were available. Conclusion The findings highlight ongoing under-representation. However, due to shortcomings in aphasia reporting, the findings may underestimate actual inclusion rate. Excluding PwA has implications for the external validity, effectiveness, and implementation of stroke research findings. Triallists may require support in aphasia research strategies and methodological reporting.

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“…Research on PTG and PTD with stroke survivors was summarized and we discussed the exclusion of PWA from the majority of those studies. Researchers acknowledge that there exist barriers to including individuals with language disorders in research including the consent process, assumption of lack of capacity versus presumption of capacity, data collection processes, and highly language-dominant outcome measurement tools (Shiggins et al, 2022b). Although a researcher may understand the reasons PWA may be excluded from studies due to language difficulties, the AAT consumer members expressed discontent and disappointment that PWA were not TOPICS IN LANGUAGE DISORDERS/JANUARY-MARCH 2023 included in the research about them.…”

Section: Aat-consumer and Expert Membersmentioning

confidence: 99%

Posttraumatic Growth in People Living With Aphasia

Brancamp

2023

Topics in Language Disorders

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The purpose of this original essay is to describe the process of developing a stakeholder-engaged research (SER) team with people who have aphasia. The SER process is described through the lens of posttraumatic growth and depreciation in aphasia. This article describes the process of modifying the Posttraumatic Growth and Depreciation Inventory (PTGI-42; Baker et al., 2008; Cann et al., 2010) with a multistakeholder research team so that individuals with aphasia may have a greater opportunity to be included in posttraumatic growth stroke outcome research. Posttraumatic growth is the positive psychological change that can be experienced as a result of the struggle with highly challenging life situations (Calhoun & Tedeschi, 2001) whereas posttraumatic depreciation is the inverse of growth, the negative aspects. To understand posttraumatic growth and depreciation in people living with aphasia, it is important that they be included in the research. To do so, we need to include people with aphasia in the research process and provide measurement tools that are aphasia friendly and accessible so that people with aphasia can participate in research and have their voices heard. This article describes the process, benefits, and challenges of stakeholder-engaged research.

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Towards the Consistent Inclusion of People With Aphasia in Stroke Research Irrespective of Discipline

Cited by 16 publications

References 52 publications

High-Intensity Aphasia Therapy Is Cost-Effective in People With Poststroke Aphasia: Evidence From the COMPARE Trial

High-Intensity Aphasia Therapy Is Cost-Effective in People With Poststroke Aphasia: Evidence From the COMPARE Trial

Are People with Aphasia Included in Stroke Trials? A Systematic Review and Narrative Synthesis

Posttraumatic Growth in People Living With Aphasia

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