Abstract: FR-PO0831
The Age Transition for People with Glomerular Diseases: Reflections of Young Adults
Session Information
- Glomerular Diseases: Practice and New Concepts Shaping Modern Care
October 23, 2026 | Location: Exhibit Hall A, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1402 Glomerular Diseases: Clinical, Outcomes, and Therapeutics
Authors
- Kwok, Jonas, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
- Schrauben, Sarah J., University of Pennsylvania, Philadelphia, Pennsylvania, United States
Background
The age transition from pediatric to adult nephrology care is challenging for patients and their caregivers. A successful and well-supported age transition is critical for glomerular disease patients' current and future health. We conducted an interview study to learn how young adults experienced this transition.
Methods
We conducted semi-structured interviews with adults <30 years diagnosed with glomerular disease prior to adulthood, recruited using purposive sampling from a glomerular diseases clinic at an academic teaching hospital. Participants had been cared for by pediatric nephrologists prior to transferring to an adult nephrologist. We employed an inductive approach to reflexive thematic analysis using a constructivist epistemology.
Results
To date, 5 participants have completed interviews (planned 12 by October 2026), ages 22-28 years. Underlying diagnoses include nephrotic syndrome (MCD, FSGS), lupus nephritis, and COL4A nephropathy.
Participants shared their lived experiences, including coping with illness, navigating healthcare systems, maturing into adulthood, and transfer to adult nephrology care. Several themes emerged: (1) importance of social supports, (2) negative impacts of symptoms and medications, (3) anxieties surrounding future health, (4) desire for autonomy with age, (5) development of resiliency, and (6) trust in pediatric providers as a key factor in positive transfer experience.
Interviewees described fluctuating impacts on their daily lives related to disease activity (flare/relapse vs quiescence/remission). While the prominence of physical symptoms tended to depend on disease activity, mental health impacts commonly persisted even during periods of disease quiescence/remission. Few individuals described structured transition processes; many were referred by their pediatric nephrologist to a specific adult provider, which improved trust and reduced anxiety, but the prevailing sentiment was that multiple and more detailed discussions of expectations would have improved the transition experience for patients and families.
Conclusion
Young adults with varying glomerular diseases face significant physical and mental tolls on their daily lives. They rely on their communities and belief systems, medical teams, and their own resiliency to support them through difficult times. Our findings may illuminate the patient experience to improve the age transition in nephrology care.