35 Scoping review pediatric patient engagement Patient engagement by age group While some studies included young adults up to age 35 (some studies included both pediatric patients and young adults), analysis of engagement methods in this paper focuses on children up to age 18. In Fig 5, an overview is provided of the number of studies that included pediatric patients in a specific age range. Pediatric patients in the age range 13-17 years were most often engaged in studies, followed by the age groups ranging from 9 to 12 years, and from 4 to 8 years. For 14 studies the age of the included pediatric patients was not clearly specified. The reason for this is in some cases that pediatric patient engagement has been conducted in a subset of the study population. 2-3 years: The youngest age at which pediatric patients were involved in studies regarding clinical care, research or intervention development was 2 years. These young children were asked about their views of, for example, the hospital clown [58], their nurse or doctor [59], or their preferences for the used design/color in their hospital environment [60]. Except for one study (draw & write/tell technique) [59], interviewing was the used method for pediatric patient engagement in this age group. In most cases, parents were present to help their child or they were afterwards asked to reflect on the experiences of their child. 4-8 years & 9-12 years: Pediatric patients in the age range 4-12 are regularly asked for their opinion in the health care setting. All described methods were used in this age group. The draw & write/tell technique is used more often in this age group compared to other age groups. 13-17 years: Adolescent patients are most often included in pediatric patient engagement. Also in this age group, all described methods for patient engagement are used. However, focus groups were used more often in this age group compared to the younger age groups. ≥18 years: Most studies involved pediatric patients in their projects until the age of 18/19 years. Some studies involved a wider population and included both pediatric patients and young adults till the age of 35. This was the case, for example, in a study that aimed to establish a research agenda for patients with pediatric inflammatory bowel disease [30] or a study that investigated the views of adolescents and young adults (AYAs) with regard to their wishes and needs for a smart phone app that could be used to improve adherence to medication in the oncology setting [34]. 2
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