Exploring the impact of patient and public involvement with young people with a chronic condition: A multilevel analysis

F. van Schelven*, P. Groenewegen, P. Spreeuwenberg, J. Rademakers, H. Boeije

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Background: 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.Methods: 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.Results: 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.Conclusions: 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.
Original languageEnglish
Pages (from-to)349-356
Number of pages8
JournalChild Care Health and Development
Issue number3
Early online date29 Dec 2020
Publication statusPublished - May 2021


  • adolescent
  • adults
  • care
  • chronic disease
  • co-researchers
  • disabilities
  • disabled children
  • impact
  • multilevel analysis
  • participatory research
  • patient participation
  • public involvement
  • transition
  • youth
  • CARE

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