28 Chapter 2 Studies that reported only on the engagement of representatives of pediatric patients (i.e., caregivers, family members) or studies that did not clearly distinguish pediatric patients as a subgroup were excluded. In addition, studies that were conducted in the field of dentistry or psychiatry or studies that described the engagement of pediatric patients in a school or home setting were excluded. Also, studies that explored the experiences of children living with a medical condition in general (e.g., experiences of children living with HIV) were excluded, unless the studies reported on the life-experiences of these children with the aim to improve a medical treatment or to develop an intervention/tool. Furthermore, studies describing the involvement of pediatric patients in developing measurements using cognitive interviews for checking the understanding of questions or icons were excluded. The research team does not consider using cognitive interviews for this purpose to be part of pediatric patient engagement. The opinion of children and adolescents is thus not being asked in these cognitive interviews. Finally, studies that only described the importance of pediatric patient engagement, but did not discuss the application of pediatric patient engagement, were also excluded. Stage 4: Charting the data A data extraction form was developed by the team, and data were extracted from the included articles by one members of the team (LT, LEV, or EEWK). A second member of the team (LT, LEV, or EEWK) cross-checked a selection of the extracted data. The following data were extracted from the articles: year of publication, country in which the study was conducted, disease group of the participants, number of participants, setting of pediatric patient engagement (health care, research, or development of interventions or tools), method used for patient engagement, and age of participants. Stage 5: Collating, summarizing, and reporting the results Extracted data were analyzed quantitatively with the use of the Statistical Package for Social Sciences (SPSS) version 28. This quantitative data provided an overview of the nature and extent of pediatric patient engagement. To learn more about the goals of pediatric patient engagement, the data were screened by the research team and examples were cited.
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