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Introduction: The transition from pediatric to adult care poses challenges for adolescents and young adults (AYA) with chronic conditions and their caregivers. A patient navigator (PN) intervention may mitigate transition-related barriers. Methods: A qualitative study was conducted within a pragmatic randomized controlled trial. A purposive sample was recruited of AYA with diverse diagnostic and demographic characteristics who worked with the PN and/or their caregivers. Seventeen participants completed semi-structured interviews at baseline and post-intervention and optional journal entries. Thematic analysis was used inductively. Results: Analysis yielded two themes from baseline interviews: 1) uncertainty and hesitation with leaving a place of support, 2) navigator assistance with post-secondary education, and three themes from post-intervention interviews: 1) emotional support, 2) informational and task-focused support, 3) navigator guidance to become more independent. Discussion: Our findings describe the needs of AYA and the experience of PN support; our findings may guide future implementation of PNs in transition care.

Background: The transition from pediatric to adult care is a period associated with adverse health outcomes (e.g., health care dropout, health deterioration and poor adherence to management) for adolescents and young adults (AYA) with chronic conditions and their caregivers. AYA and caregivers often struggle to adapt to adult care settings resulting from a lack of preparedness and difficulties accessing services to manage their health conditions. To adequately design transition interventions and supports, it is critical to explore what skills AYA think would increase their confidence and ability to successfully move into adult health care. Methods: The Transition Navigator Trial is a randomized controlled trial being conducted in Alberta, Canada, recruiting from three major tertiary care pediatric centers, in which half of participants receive a patient navigator, whose goal is to assist with this transition. Twenty-seven youth were interviewed at baseline, with a planned follow-up interview at the end of the trial. Participants were asked about their perspectives on the upcoming transition and how working with the navigator may assist with the transfer to adult-oriented services. Using an inductive approach to thematic analysis, baseline interviews were analyzed to explore AYA perspectives on their wants and needs for an upcoming transition to adult health care. The overarching guiding question is: what skills do AYA desire to assist with the transition to adult health care services? Results: Two broad themes were generated based on participant baseline interviews: 1) ownership of care; and 2) system navigation. Participants identified that self-management and self-advocacy skills are essential for taking ownership of their own healthcare. Participants identified that even when they have acquired the necessary skills to take ownership of their care, there is a further step of system navigation that they might require external help with. Conclusions: It has been highlighted in the literature that health-related knowledge, self-advocacy, and self-management skills promote a more successful transition, however, a gap exists in what youth prioritize as important skills. These findings exemplify that AYA want to gain skills that will allow for independence and success in the transition to adult health care. By involving youth in the development of future transition interventions, we can better understand the needs and priorities of AYA to assist in the success of transition to adult health care.

Background: Adolescents and emerging adults (AEA) with chronic health conditions may face numerous challenges when undergoing the transition from pediatric to adult health care. Despite the need for engagement with AEA in health research, little is known about how researchers operationalize this engagement. In an effort to enhance transparency in the practices of patient engagement, this commentary details the process of developing a pediatric-adult transition-specific youth advisory council in Alberta: the Transition Research Advisory Council (TRAC). Objectives: We provide an overview of AEA engagement in health research and detail TRAC’s recruitment and onboarding strategies. Moreover, TRAC members provided reflections on their motivations and experiences during the onboarding process. Key recommendations: This commentary provides key recommendations for AEA council development, emphasizing equity, diversity, and inclusion principles, optimizing compensation plans, adopting an iterative engagement approach, fostering capacity-building and mentorship, and promoting empowerment in decision-making.