Key result
Structured transition programs support care continuity and reduce treatment gaps in young adults with XLH.
Why the study?
Transition from pediatric to adult services in XLH represents a vulnerable period often marked by reduced treatment adherence and loss to follow-up, necessitating a practical framework to support care continuity.
Structured, multidisciplinary transition pathways from pediatric to adult care are essential for maintaining treatment adherence and optimizing long-term outcomes in patients with X-linked hypophosphatemic rickets.
Supports multidisciplinary XLH transition programs; extends consensus but leaves open need for prospective trials.
X-linked hypophosphatemic rickets (XLH) requires lifelong, coordinated, and multidisciplinary care, and the transition from pediatric to adult services represents a particularly vulnerable period often accompanied by reduced treatment adherence and a greater risk of loss to follow-up. This review aims to provide a clear, practical framework for supporting the transition of adolescents and young adults with XLH by synthesizing international guidelines, consensus statements, and clinical practice reports published up to August 2025. Current recommendations highlight the importance of early assessment of transition readiness, structured and developmentally appropriate education for patients and their families, close collaboration between pediatric and adult endocrinology teams, and the continuation of therapy with standardized monitoring protocols. A well-designed yet flexible transition pathway may support adherence, ensure continuity of care, and contribute to improved long-term outcomes. By summarizing existing evidence and identifying areas where data remain limited, this review underscores the need for prospective studies to better define optimal management strategies for adults living with XLH.
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Kandemir et al. (2026) conducted a review in Adolescents and adults with X-linked hypophosphatemic rickets undergoing transition from pediatric to adult care. Structured transition of care program incorporating multidisciplinary management including endocrinology, orthopedics, dentistry, audiology, psychology, physiotherapy, nephrology, and genetics vs. No structured or uncoordinated transition care was evaluated on Successful transition defined by attendance at first adult care visit and follow-up within 3-6 months. Structured, multidisciplinary transition care programs support continuity and adherence in adolescents and young adults with XLH, reducing risk of treatment gaps and loss to follow-up during transfer from pediatric to adult services.
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