Postgraduate Program in Rehabilitation Science, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil.
Department of Physical Therapy, Universidade Federal de Minas Gerais (UFMG), Belo Horizonte, Brazil.
Int J Stroke. 2024 Oct;19(9):962-972. doi: 10.1177/17474930241262638. Epub 2024 Jul 31.
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.
This scoping review, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Scoping Review guidelines, aims to identify and summarize how PPI is currently implemented and reported in empirical stroke research using a participatory approach.
A comprehensive search strategy was developed and implemented across Medline, CINAHL, EMBASE, PsynchINFO, and Cochrane electronic databases, supplemented by gray literature searches. Empirical stroke research articles in the English language, published from 2014 up to 2023, and documenting PPI activity were included. Of the 18,143 original articles identified, 2824 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 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 to dissemination. When studies were examined for compliance with the Guidance for Reporting Involvement of Patients and the Public (GRIPP) 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.
PPI is underutilized and inconsistently reported in current empirical stroke research. PPI must become more widely adopted, notably in low- and middle-income countries. Consensus-driven standards for inclusion of PPI by funding organizations and publishers are required to support its widespread adoption.
为了应对全球范围内卒中负担过重的问题，需要在监测、预防、急性治疗和康复方面提供具有影响力的、基于证据的解决方案，以满足卒中幸存者的需求。患者和公众参与（PPI）是指患者、他们的家属和公众作为研究伙伴积极参与，这可以提高与卒中相关研究的相关性、可信度和影响力。
本研究遵循系统评价和荟萃分析的首选报告项目（PRISMA）综述指南，旨在确定和总结当前如何使用参与式方法在实证性卒中研究中实施和报告患者和公众参与（PPI）。
制定并实施了一项全面的检索策略，涵盖了 Medline、CINAHL、EMBASE、PsynchINFO 和 Cochrane 电子数据库，并补充了灰色文献检索。纳入了 2014 年至 2023 年期间发表的、以英文撰写的，并记录了 PPI 活动的实证性卒中研究文章。在最初确定的 18143 篇文章中，有 2824 篇符合时间范围的全文文章进行了筛选。仅有 2%（n=72）的文章直接报告了实证研究中的嵌入式 PPI 活动。其中大多数为定性设计（60%），且在高收入国家进行（96%）。仅有一项来自发展中国家的研究，该研究中卒中负担最高。大多数研究（94%）提供了一些关于与 PPI 合作伙伴开展的活动的信息，主要集中在研究设计（57%）和管理（64%）方面，只有 4%的研究将 PPI 整合到从资金申请到传播的整个研究周期阶段。当根据患者和公众参与指导（GRIPP）简化清单检查表对研究进行检查时，只有 11%的纳入研究完全符合检查表。21 项研究（29%）报告了在卒中研究中纳入 PPI 的障碍和促进因素。组织、真实的伙伴关系和有经验的 PPI 代表是常见的促进因素，而发现的障碍反映了对充足资金、所需时间和观点多样性的担忧。观察到对 PPI 影响的积极报告偏见，总结为将患者观点置于研究过程的中心、改善研究参与者的护理、验证研究结果以及改进对复杂研究概念的沟通/通俗摘要。
在当前的实证性卒中研究中，患者和公众参与（PPI）的利用不足且报告不一致。必须更广泛地采用患者和公众参与（PPI），特别是在低收入和中等收入国家。需要有资金组织和出版商共同推动的纳入患者和公众参与（PPI）的共识驱动标准，以支持其广泛采用。
