A scoping review of patient and public involvement in empirical stroke research.

IF 6.3 2区 医学 Q1 CLINICAL NEUROLOGY
International Journal of Stroke Pub Date : 2024-10-01 Epub Date: 2024-07-31 DOI:10.1177/17474930241262638
Paula da Cruz Peniche, Christina Danielli Coelho de Morais Faria, Patricia Hall, Caitriona Fingleton, Louise McPhillips, Rebecca Gaetz, Aaron Roche, Laura McCann, Padraig O'Beaglaoich, Diarmuid Murphy, Julianne Hickey, Olive Lennon
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引用次数: 0

Abstract

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 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.

Summary of review: 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.

Conclusions: 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.

卒中实证研究中患者和公众参与 (PPI) 的范围审查。
背景:要解决中风给全球带来的沉重负担,需要在监测、预防、急性期治疗和康复方面为中 风幸存者提供有影响力的循证解决方案。患者和公众参与(Patient and Public Involvement,PPI),即患者、患者家属和公众作为研究伙伴积极参与,可提高中风相关研究的相关性、可信度和影响力。目的:本范围界定综述遵循 PRISMA 范围界定综述指南,旨在确定和总结目前在实证中风研究中如何使用参与式方法实施和报告 PPI:制定并实施了全面的检索策略,涵盖 Medline、CINAHL、EMBASE、PsynchINFO 和 Cochrane 电子数据库,并辅以灰色文献检索。纳入了从 2014 年到 2023 年发表的、记录 PPI 活动的英文脑卒中实证研究论文。在确定的 18,143 篇原始论文中,筛选了 2,824 篇与该时间窗口匹配的全文手稿。其中只有 2%(n=72)直接报告了实证研究中的嵌入式 PPI 活动。大多数研究采用定性设计(60%),在高收入国家进行(96%)。只有一项纳入的研究来自中风负担最重的发展中国家。大多数研究(94%)提供了一些有关与其 PPI 合作伙伴开展活动的信息,主要集中在研究设计(57%)和管理(64%)方面,只有 4% 的研究将 PPI 纳入了从资金申请到传播的所有研究周期阶段。在检查研究是否符合《患者和公众参与报告指南》(GRIPP2)简表清单时,只有 11% 的纳入研究 100%符合要求。21项研究(29%)报告了将患者和公众参与纳入卒中研究的障碍和促进因素。组织、真实的合作关系和经验丰富的 PPI 代表是常见的促进因素,已确定的障碍反映了对充足资金、所需时间和观点多样性的担忧。研究发现,PPI 的影响存在积极的报告偏差,概括为将患者视角置于研究过程的中心位置、改善对研究参与者的护理、验证研究结果以及改善复杂研究概念的沟通/非专业总结:结论:在目前的卒中实证研究中,PPI 未得到充分利用,报告也不一致。必须更广泛地采用 PPI,尤其是在中低收入国家。为支持 PPI 的广泛采用,资助机构和出版商需要制定以共识为导向的 PPI 纳入标准。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
International Journal of Stroke
International Journal of Stroke 医学-外周血管病
CiteScore
13.90
自引率
6.00%
发文量
132
审稿时长
6-12 weeks
期刊介绍: The International Journal of Stroke is a welcome addition to the international stroke journal landscape in that it concentrates on the clinical aspects of stroke with basic science contributions in areas of clinical interest. Reviews of current topics are broadly based to encompass not only recent advances of global interest but also those which may be more important in certain regions and the journal regularly features items of news interest from all parts of the world. To facilitate the international nature of the journal, our Associate Editors from Europe, Asia, North America and South America coordinate segments of the journal.
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