Reframing healthcare transition: Systems, relationships, and independence in adolescent-to-adult care

This article summarizes the findings from a roundtable convening led by the organization Generation Patient between patients, healthcare providers, and researchers on the transition from pediatric to adult care, identifying barriers at both within the clinic and broader system levels, including the need for improved self advocacy skills, tailored care approaches for patients with complex care needs, and systemic supports such as transition navigators and social workers. Recommendations include enhancing patient independence during pediatric care, adopting a multidisciplinary team approach, and implementing long-term system reforms such as improved adult provider training and Medicaid policy changes. These insights present a call to action for healthcare stakeholders to share responsibility and take a more active role to ensure patients with chronic conditions receive the appropriate care after they transition from pediatrics.

Introduction

Transition from pediatric to adult care remains a significant challenge for adolescents and young adults (AYAs) with chronic conditions. Insufficient preparation and support during this period can lead to increased morbidity and gaps in care. Existing systems often place the burden of transition on patients and families, resulting in unmet needs for self-advocacy skill development, tailored care approaches for diverse populations, and system-level supports.

Methods

A roundtable was convened by the young-adult-led advocacy organization Generation Patient, involving 9 healthcare professionals (physicians, nurses, social workers, researchers, transition specialists) and 11 young adult patients from across the United States. Discussions were structured to elicit experiences and recommendations regarding barriers and solutions for healthcare transition. Qualitative analysis of the proceedings identified key themes and consensus recommendations.

Results

Participants highlighted that current transition processes are abrupt and emotionally taxing for AYAs, especially those with complex or rare conditions and neurodevelopmental differences. Barriers included limited preparation for patient independence, lack of individualized care models, insufficient system supports, and challenges with insurance and provider handoffs. Recommendations focused on early promotion of independence within pediatric care, personalized approaches for patients with varied needs, integration of transition navigators and case managers, and upstream reforms such as Medicaid policy changes and enhanced adult provider training.

Conclusion

A successful transition from pediatric to adult care requires moving beyond solely individual patient solutions toward system-wide, collaborative responsibility. Engaging multidisciplinary teams, supporting patient autonomy, and implementing policy reforms are essential steps to ensure continuity and quality of care for AYAs with chronic conditions.