Half of pediatric rheumatology patients lost, Congress data shows

About half of pediatric rheumatology patients are lost to follow-up after their first transfer visit to adult care, according to data presented at the Congress of Clinical Rheumatology West in Huntington Beach, California.

The Steep Hurdles of the Adult Healthcare Shift

John M. Bridges, MD, MS, a combined adult and pediatric rheumatologist at the University of Alabama at Birmingham, detailed the hurdles young adults face during the Congress of Clinical Rheumatology West. Bridges described the shift as a precarious period marked by insurance changes, geographic mobility, and adherence challenges. For patients diagnosed with rheumatic diseases during childhood, the transition breaks a long-standing therapeutic alliance built with pediatric providers who guided them through initial diagnoses and early treatment regimens.

According to Bridges, moving to the adult healthcare system often feels like a scary and emotional graduation for patients and their families. While adult rheumatologists must acknowledge these emotional shifts, retaining patients in care directly improves long-term health outcomes. To bridge the gap, adult specialists are encouraged to assess where incoming patients stand in their transition process and meet them at their current level of readiness.

Clinical Priorities During the Initial Encounter

Bridges outlined several clinical priorities for the first visit with an incoming young adult. Adult rheumatologists should inquire about recent complications, medication changes, root causes of adherence challenges, and any social, financial, or intellectual hurdles impacting the patient. While direct communication between pediatric and adult physicians represents an ideal standard of care, logistical barriers frequently prevent face-to-face or phone handoffs.

Clinicians Should Maintain Baseline Treatments During Initial Encounters

During the initial encounter, clinicians should congratulate the patient on graduating to adult care, clarify the structural differences between pediatric and adult models, and establish clear roles for both the patient and their parents. Bridges stressed that adult providers should avoid altering established medication regimens whenever possible during this initial phase. Maintaining baseline treatments helps preserve low disease activity while building rapport within an adult-centered framework.

Key Clinical Takeaways

• Approximately 50% of pediatric rheumatology patients fail to continue care after transitioning to adult medical providers.
• Young adults shifting to adult-centered models face steep hurdles, including insurance coverage gaps, geographic moves, and medication adherence issues.
• Specialists recommend minimizing medication changes during the initial transfer and actively reviewing the patient’s treatment history to maintain low disease activity.

Disclaimer: The information provided in this article is for educational and scientific communication purposes only and does not constitute medical advice. Always consult with a qualified healthcare provider regarding any medical condition, diagnosis, or treatment plan.