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A Scoping Review of Patient and Public Involvement (PPI) in Empirical Stroke Research.

BACKGROUND: Impactful, evidence-based solutions in surveillance, prevention, acute care, and rehabilitation for stroke survivors are required to address the high global burden of stroke. Patient and Public Involvement (PPI), where patients, their families, and the public are actively involved as research partners, enhances the relevance, credibility, and impact of stroke-related research.

AIMS: This scoping review, adhering to the PRISMA Scoping Review guidelines, aims to identify and summarize how PPI is currently implemented and reported in empirical stroke research using a participatory approach.

SUMMARY OF REVIEW: A comprehensive search strategy was developed and implemented across Medline, CINAHL, EMBASE, PsynchINFO and Cochrane electronic databases, supplemented by grey literature searches. Empirical stroke research papers in the English language, published from 2014 up to 2023 and documenting PPI activity were included. Of the 18,143 original papers identified, 2,824 full text manuscripts matching from this time window were screened. Only 2% (n=72) of these directly reported embedded PPI activity in empirical research. The majority were qualitative in design (60%) and were conducted in high-income countries (96%). Only one included study originated from a developing country, where the burden of stroke is highest. Most studies (94%) provided some information about the activities carried out with their PPI partners, mainly centered on the study design (57%) and management (64%), with only 4% of studies integrating PPI across all research cycle phases from funding application through to dissemination. When studies were examined for compliance with the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) short form checklist, only 11% of included studies were 100% compliant. Twenty-one studies (29%) reported barriers and facilitators to including PPI in stroke research. Organization, authentic partnership and experienced PPI representatives were common facilitators and identified barriers reflected concerns around adequate funding, time required and diversity in perspectives. A positive reporting bias for PPI impact was observed, summarized as keeping the patient perspective central to the research process, improved care of study participants, validation of study findings, and improved communication / lay-summaries of complex research concepts.

CONCLUSIONS: PPI is underutilised and inconsistently reported in current empirical stroke research. PPI must become more widely adopted, and notably in low- and middle-income countries. Consensus-driven standards for inclusion of PPI by funding organisations and publishers is required to support its widespread adoption.

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