http://www.bi-sli.org

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Introduction: Aphasia affects a third of stroke survivors (~5.6 million worldwide annually). The social and emotional impact of aphasia makes timely and effective rehabilitation vital. Speech and language therapy benefits recovery; however the specific patient, stroke, aphasia and intervention factors which optimize recovery and rehabilitation are unclear. We will explore these uncertainties in our RELEASE study (NIHR HS&DR 14/04/22). In Phase I of this study we aimed to create a large, collaborative, international database of IPD from pre-existing aphasia research. Method: Eligible datasets included IPD of ≥10 people with stroke-related aphasia, with time post-stroke specified and aphasia severity data. Contributions were invited from international, multidisciplinary, aphasia research collaborators via the EU COST funded Collaboration of Aphasia Trialists. We also conducted a systematic search of the literature [Cochrane Stroke Group Trials, MEDLINE, CINAHL, AMED, Cochrane Library Databases (CDSR, DARE, CENTRAL, HTA), EMBASE, LLBA and SpeechBITE from inception to Sept 2015 for additional datasets. Two independent reviewers considered full texts with a third resolving any conflicts. Results: As of June 2016 our database included 2,531 IPD from 11 countries (33 datasets). Nine were in the public domain.  Following the systematic search of 5,272 records (of which 75 duplicates, 2,395 reference titles and 965 abstracts were excluded) further datasets were identified and invited to collaborate. Conclusion: We succeeded in creating a large, collaborative, international aphasia database of pre-existing IPD. A systematic search process to identify additional datasets eligible for inclusion supplemented more informal dataset recruitment methods.

Duration: 2 years

Website: http://www.aphasiatrials.org/index.php/working-groups/prognosis-predictors/research/2-uncategorised/137-rehabilitation-and-recovery-of-people-with-aphasia-after-stroke-release

Funding: National Institutes of Health Research

Background: Aphasia research has often remained region and discipline-specific, employing a range of outcome measurements to assess effectiveness of interventions. We sought to develop a core outcome set (COS) for use across a planned, prospective, observational, open, mixed methods, blinded endpoint study (I-PRAISE).   

Methods: We developed an I-PRAISE team comprising representatives from each participating nation who would act as principal investigators (PIs) for their respective countries. We conducted a survey of PIs and a sample of potential participating sites (n=35) across the UK, Germany, Portugal, Finland, Sweden, Australia, Israel and Italy to determine the familiarity, feasibility and acceptability of use of common outcome measures for post-stroke aphasia assessment in their respective settings. We defined our key domains for assessment according to the International Classification of Functioning, Disability and Health (ICF); ease of adaptation, translation, and availability of routinely collected data were also considered. We assessed the psychometric properties of potentially eligible assessment tools in an iterative manner until a COS could be agreed within the group. We developed a case report form (CFR) based on data essential for analyses of key research questions, and circulated this CRF for review amongst the I-PARISE team and potential participating sites.

Results: Our primary outcome measure was functional communication, assessed using the Amsterdam Nijmegen Everyday Language Test (ANELT)/ Scenario test (in case of floor effects on the ANELT during baseline assessment) and Therapy Outcome Measure (TOMS) at 12 months post-stroke. Secondary outcomes include: language deficits using the Aphasia Severity Rating Scale (ASRS)/Revised Western Aphasia Battery (WAB-R) at 6 and 12 months post-stroke; Societal participation using the Subjective Index of Physical and Social Outcome (SIPSO) at 6 and 12 months post-stroke and depression using the Stroke Aphasic Depression Questionnaire (SADQ) at 6 and 12 months post-stroke.

Conclusion: This COS will be implemented across 14 countries in I-PRAISE, with data collection planned to commence in Jan 2019.

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Post-stroke Aphasia affects the understanding and/or expression of spoken and written language, leading the patients to an altered social interaction and social isolation. Furthermore, aphasia contributes to poorer functional recovery, mobility, discharge destination and return to employment. Beyond that, aphasia research typically remains language, region and discipline specific limiting the efficiency, strength and broader relevance of any research. This Action aimed to establish a network of leading European multidisciplinary aphasia investigators in rehabilitation, social science, linguistics and language research, so as to enhance knowledge, skills and methodology relating to aphasia research. Consensus activities facilitated international synergy between members in aphasia assessment & diagnosis. Data sharing activities supported enhanced prognosis and rehabilitation of aphasia. Overall, this Action fostered and coordinated the development of high quality aphasia research activity which addresses the needs of people with aphasia and their families, health and social care providers and voluntary groups.

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Funding: COST Action

Oral language (speaking and understanding) is critical to children's development, affecting the emergence of personal, social and academic skills throughout school and into the workplace. Most children acquire such skills effortlessly but a sizeable proportion, those with Language Impairment (LI), do not. LI affects 5.8 million children and young people (0-18 years) across Europe. There is evidence for the efficacy and effectiveness of intervention to improve the language skills of these children but this information is not well disseminated and services are inconsistent across Europe. This Action will enhance the science in the field, improve the effectiveness of services for children with LI and develop a sustainable network of researchers well placed to answer the key questions in this area.

Duration: 2015 – Present

Website: http://www.cost.eu/COST_Actions/isch/IS1406

Funding: COST Action - 1,2000,000 €