Transitioning adolescents with rare forms of diabetes to adult care: challenges and perspectives.

This research paper looks at the challenges teenagers and young adults face when moving from pediatric to adult healthcare, specifically focusing on those with rare forms of diabetes including Bardet-Biedl Syndrome (BBS). The researchers found that this transition is particularly difficult for young people with these rare conditions because they often have multiple health issues beyond just diabetes - such as vision or hearing problems, hormone imbalances, and sometimes learning difficulties. The current healthcare system makes this worse because pediatric care tends to be more coordinated and family-focused, while adult care is often fragmented with specialists who may not be familiar with these rare conditions. The study highlights several solutions that could help make this transition smoother. These include starting transition planning early (while still in pediatric care), providing education specifically tailored to each rare syndrome, using digital tools to help manage care, and creating better communication between pediatric and adult healthcare teams. The researchers emphasize that young people with conditions like BBS need specialized support that considers both their medical needs and their emotional readiness to take on more responsibility for their care. The authors conclude that without proper funding and policy changes, young people with rare forms of diabetes will continue to face gaps in their care during this critical transition period. They call for healthcare systems to create dedicated transition programs that are specifically designed for rare conditions, ensuring these young patients don't fall through the cracks as they move to adult care.

Adolescents and young adults (AYA) with rare forms of diabetes - including Wolfram syndrome (WS), Alström syndrome (AS), Bardet-Biedl syndrome (BBS), and maturity-onset diabetes of the young (MODY) - face unique challenges during the transition to adult care. These challenges are intensified by multisystem endocrine involvement, neurocognitive and sensory impairments, and limited adult provider expertise. This narrative review describes transition-specific barriers in rare diabetes syndromes, explores current initiatives, and proposes recommendations for care models and health system reform. Syndromic forms of diabetes often involve complex endocrine dysfunctions beyond glycemic control, including diabetes insipidus, hypogonadism, and thyroid or pituitary anomalies. Transitions are further hindered by diagnostic uncertainty, fragmented care structures, and insufficient interdisciplinary coordination. Pediatric care is often proactive and family-centered, while adult services are fragmented and reactive. Dedicated multidisciplinary transition services remain scarce. Best practices include early transition planning, syndrome-specific education, the use of patient-reported outcome measures (PROMs), and integration of digital tools. Structured collaboration between pediatric and adult providers - including virtual models - should be supported. Patient-centered approaches must address both medical and psychosocial readiness, with tailored communication for those with sensory or cognitive impairments. Sustainable transition programs require dedicated funding, institutional prioritization, and policy inclusion in national and European rare disease frameworks. Without adequate financial support, disparities in care continuity and outcomes are likely to persist. A coordinated, multidisciplinary, and resourced transition model is essential to safeguard health, autonomy, and long-term outcomes in AYA with rare diabetes syndromes. Young people with rare forms of diabetes - such as Wolfram syndrome (WS), Alström syndrome (AS), Bardet-Biedl syndrome (BBS), or maturity-onset diabetes of the young (MODY) - face special challenges when moving from pediatric to adult healthcare. These rare conditions often affect more than just blood sugar and can involve vision, hearing, and other parts of the body. As they grow older, these adolescents must not only manage their complex health needs but also learn to take more responsibility for their care. This article explains why the transition to adult care is especially difficult for this group. It shares experiences from families and healthcare providers and describes what can help: early preparation, teamwork between child and adult doctors, digital tools, and emotional support. The authors call for stronger guidelines and better cooperation across healthcare systems so that young people with rare diabetes can stay healthy and feel supported during this important time in life.