259 Discussion Table 1. Overview of the main findings of this thesis Part 1. Pediatric patient engagement Chapter Short title Aim Participants Methods Main findings & conclusion 2 Scoping review pediatric patient engagement To provide an overview of the literature about pediatric patient engagement in clinical care, research and intervention development. Not applicable The methodological framework of Arksey & O’Malley was used: 1. Identifying the research question 2. Identifying relevant studies 3. Study selection 4. Charting the data 5. Collating, summarizing, and reporting the results • There is an increase in the number of studies that include pediatric patient engagement in the past decades. • Most studies involving pediatric patient engagement were performed in the United States of America. • When looking at patient populations, a mix of patients from different disease groups were mostly asked for their opinion, followed by oncology patients. • The majority of studies focused on the engagement of pediatric patients in clinical care. • The individual interview is the most commonly used method to engage pediatric patients. • Pediatric patients in the age range 9-17 years were most often engaged. There is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information/support for clinicians hinders engagement. 3 Development of a patient engagement tool; All Voices Count To develop a patient engagement game for adolescents (12-18y) with a chronic condition that can be used by clinicians/researchers to incorporate what matters to pediatric patients in clinical care, research and policy. Adolescents with a chronic condition under treatment at the Emma Children’s Hospital Amsterdam UMC An uses-centered design was used: 1. Identification of important themes for adolescents regarding their illness and treatment Focus groups with adolescents (N=15) 2. Evaluation of the draft version of the game Focus groups with adolescents (N=13) 3. Testing usability in clinical practice Pilot workshop with adolescents (N=4) • Ten major themes for adolescents regarding their illness, treatment and hospital care were identified: visiting the hospital, participating, disease & treatment, social environment, feelings, dealing with staff, acceptation, autonomy, disclosure, and chronically ill peers. • Development of a pediatric patient engagement game called All Voices Count. This game provides clinicians with a tool to include pediatric patients meaningfully in hospital care, research and policy. 9
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