Background/Purpose: Nationwide initiatives call for improved healthcare services that empower adolescents to become independent in their health management and remain engaged in healthcare through young adulthood. Successful implementation of transitional care within clinical settings requires input from multiple stakeholders, including patients. The purpose of this study is to learn about patients’ transitional care experiences and their recommendations for how to effectively engage, educate, and empower youth using the Six Core Elements of Healthcare Transition™.

Methods: Drawing from the Practical, Robust Implementation and Sustainability Model, adolescents and young adults (16-28 years old) with self-reported rheumatic disease are being recruited through patient organizations to complete a 90-minute in-person or online focus group. Focus group facilitators use a semi-structured guide to collect participants’ interpretations and reactions to the Six Core Elements™, a quality improvement model for improving transitional care in local healthcare settings. Audio recordings are being transcribed and will be analyzed using rapid analysis upon data collection completion.

Results: Preliminary analysis included 38 participants (21±3 years old; majority diagnosis: JIA (n=31, 82%)). Twenty participants (53%) reported they had transferred from pediatric to adult rheumatology care; most received no transition guidance. Similarly, most participants learned the term “healthcare transition” outside of clinic (e.g. arthritis camp) and had yet to receive relevant information in clinic.

In general, all participants were satisfied with the Six Core Elements™ and supported the concepts within each step, though none had heard of the program. Preliminary themes include: 1) Because they had multiple diagnoses, participants interpreted that they required not one, but several healthcare transitions. As such, they prioritized learning an overarching process of empowerment to manage changes in their health and healthcare, and advocate for themselves. 2) Most participants experientially acquired their current health management skills from parents. In contrast, they conceptualized ideal healthcare transition as a transparent education process initiated in early adolescence and led by their healthcare team. 3) Participants desired tangible resources that delineated clinic transition policies and timeline of achievable skill development milestones, and facilitated discussion around age-appropriate health topics. 4) Preferred format (e.g. online versus paper) varied, but participants agreed resources should not be self-led, but reviewed in medical appointments. In addition, materials resembling homework would mask its usability and deter peers from being honest with their clinician. 

Conclusion: Adolescents and young adults with rheumatic diseases viewed the Six Core Elements™ favorably, but were concerned by its lack of real-world implementation. Participants provided recommendations for how to engage their peers within each of the six steps, which will be translated into a nationwide survey to understand generalizability.

« Back to 2020 Pediatric Rheumatology Symposium

ACR Meeting Abstracts - https://acrabstracts.org/abstract/perspectives-of-adolescents-and-young-adults-around-implementing-rheumatology-healthcare-transition-preliminary-qualitative-findings/