van Schelven Femke, Groenewegen Peter, Spreeuwenberg Peter, Rademakers Jany, Boeije Hennie
Department Perspective of patients and clients in healthcare, Netherlands Institute for Health Services Research, Utrecht, The Netherlands.
Department of Sociology and Department Human Geography, Utrecht University, Utrecht, The Netherlands.
Child Care Health Dev. 2021 May;47(3):349-356. doi: 10.1111/cch.12847. Epub 2021 Jan 13.
Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) receives increasing attention. However, evidence of its impact is lacking. This study explores the impact of PPI on outcomes of projects in health and social care, using quantitative measures.
Data were collected from projects funded by a 4-year participatory program addressing the social position of YPCC. These projects addressed challenges associated with, for example, going to college with a physical disability, transitions in care and finding a job. Project coordinators filled out project reports with questions about PPI, that is, to what extent were YPCC involved, were they involved as co-deciders and were they involved in developing the project idea. YPCC filled out questionnaires with questions about PPI, that is, the number of PPI activities and self-perceived importance for the project. They also answered questions about the influence of the project on their social position. Based on these questions, a project outcome scale was developed.
The data concerned 17 projects and 146 YPCC. Variation existed in project outcomes, of which 27% was associated with differences between projects. Using multilevel analyses, a significant relation was found between the self-perceived importance of YPCC for the project and the project outcomes they experience (0.232, p < 0.01). There was no significant association with the other PPI variables.
This study provided some first quantitative evidence that PPI has a positive impact on the YPCC involved. It is suggested that the meaningfulness of PPI matters more to them than the number of activities and amount of influence provided to YPCC. We strongly recommend conducting more research that critically examines impact of PPI.
慢性病青年患者（YPCC）的患者及公众参与（PPI）受到越来越多的关注。然而，缺乏其影响的证据。本研究使用定量方法探讨PPI对健康和社会护理项目结果的影响。
数据收集自一个为期4年的参与式项目资助的项目，该项目关注YPCC的社会地位。这些项目解决了与例如身体残疾上大学、护理过渡和找工作相关的挑战。项目协调员填写关于PPI的项目报告问题，即YPCC参与的程度、他们是否作为共同决策者参与以及他们是否参与项目想法的制定。YPCC填写关于PPI的问卷问题，即PPI活动的数量以及对项目的自我感知重要性。他们还回答了关于项目对其社会地位影响的问题。基于这些问题，制定了一个项目结果量表。
数据涉及17个项目和146名YPCC。项目结果存在差异，其中27%与项目之间的差异有关。使用多层次分析，发现YPCC对项目的自我感知重要性与他们所经历的项目结果之间存在显著关系（0.232，p < 0.01）。与其他PPI变量没有显著关联。
本研究提供了一些初步的定量证据，表明PPI对所涉及的YPCC有积极影响。建议PPI的意义对他们来说比提供给YPCC的活动数量和影响程度更重要。我们强烈建议进行更多批判性审视PPI影响的研究。
