37 Scoping review pediatric patient engagement underline. In the future, consensus needs to be reached about the definition of pediatric patient engagement and about the way clinicians and researchers should engage pediatric patients in their studies [3,5,9]. While conducting this study, it became evident that information on how pediatric patients were engaged was lacking. Therefore, we recommend, as a next step in the field, the development of a guideline to secure a uniform way to report on pediatric patient engagement in scientific papers. This guideline should include information on operationalization of patient engagement, goal, setting, age of patients, methods used, feasibility, and should be established in co-creation with all relevant stakeholders, definitely including patients and parents. Regardless the external pressure/reinforcement (for example, pediatric patient engagement is increasingly mentioned as a requirement for grand applications by subsidy providers) for researchers to involve pediatric patients in their projects, only a few research projects include pediatric patients. This suggests that researchers need more tools and (financial) support to engage pediatric patients meaningfully. For example, we recently developed a patient engagement game for adolescents with a chronic condition, in cocreation with all stakeholders [61]. This game provides researchers and clinicians with a tool that can help them to engage pediatric patients meaningful in decision-making about clinical care, research and intervention development. In addition, we saw in some included studies that a small number of pediatric patients were involved in the project without having influences on the choices made, leading to tokenistic participation (a symbolic or perfunctory form of patient engagement, in which patients have no influence on decision-making [62]). Breaking through tokenism is difficult, as long as the added value and impact of pediatric patient engagement is not fully recognized, and challenges as funding, representativeness, changing power relations, and letting go of control over the project are not yet overcome [2,3]. In addition, there are reasons and situations in which it may be particularly challenging or even inappropriate to engage children, because they may not have the capacity to understand some aspects of their care, and ultimately their parents can legally override their decisions about their own care. Different methods were used to involve patients, with the individual interview being the most common method [9]. The methods used in pediatric patient engagement correspond with previous literature about patient engagement with both children and adult patients [3,9]. Yet, there is no known best method to use for patient engagement. Which method is chosen depends on the project in which 2
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