Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
Department of Family Medicine, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands.
Health Expect. 2020 Aug;23(4):789-801. doi: 10.1111/hex.13069. Epub 2020 May 5.
The involvement of young people with a chronic condition in research and implementation projects in health and social care receives growing attention. Yet, there is a lack of conceptual clarity of this so-called 'Patient and Public Involvement' (PPI) and methods to systematically evaluate it are absent. This scoping review aimed to gain insight into developments in the existing literature on PPI of young people with a chronic condition by mapping reported definitions, goals, activities, experiences and impact.
We conducted searches in Cinahl, Embase, PsycINFO, PubMed and Scopus. Included articles described involvement of young people with a chronic condition in research and implementation projects, contained empirical data, were written in English and were published after 1990. Two researchers independently carried out the data extraction.
Twenty-three studies out of 4993 initial hits met the inclusion criteria. We found great variation in definitions and operationalizations of PPI. Reflections of authors on the process of PPI and its impact were similar and did not change over the years.
Limited progress in the evidence base of the impact of PPI with young people with a chronic condition was found. Over the years, studies continue to report similar experiences and challenges. In order to move forward, we suggest future research to make connections to existing work instead, to include thorough descriptions of what is understood by PPI and how this is translated into activities, and to use systematic and objective, but also flexible, methods to measure its impact.
越来越多的人关注年轻人参与健康和社会保健领域的研究和实施项目。然而，这种所谓的“患者和公众参与”（PPI）缺乏明确的概念，也缺乏系统评估它的方法。本范围综述旨在通过描述报告的定义、目标、活动、经验和影响，深入了解慢性疾病年轻人参与的现有文献中的发展情况。
我们在 Cinahl、Embase、PsycINFO、PubMed 和 Scopus 中进行了搜索。纳入的文章描述了年轻人参与研究和实施项目的情况，包含实证数据，用英语书写，发表时间在 1990 年以后。两名研究人员独立进行数据提取。
在 4993 篇初始文献中，有 23 篇符合纳入标准。我们发现 PPI 的定义和操作有很大差异。作者对 PPI 过程及其影响的反思是相似的，多年来没有改变。
我们发现，关于年轻人参与 PPI 的影响的证据基础进展有限。多年来，研究继续报告类似的经验和挑战。为了取得进展，我们建议未来的研究将其与现有工作联系起来，包括对 PPI 的含义及其如何转化为活动的详细描述，并使用系统和客观但灵活的方法来衡量其影响。
