Rekomendacje do przejścia z opieki pediatrycznej na dorosłą u młodzieży z cukrzycą, epilepsją i ADHD. Projekt TransiDEA
Recommendations for transitioning diabetes, epilepsy, and ADHD youth. The TransiDEA Project
W skrócie
Projekt TransiDEA opracował wytyczne ułatwiające przejście młodych ludzi z leczenia u dzieci do lekarzy dla dorosłych, którzy mają cukrzycę, epilepsję lub ADHD. Badacze pracowali z lekarzami, pacjentami i rodzinami, aby stworzyć praktyczne rady dostosowane do każdej choroby, takie jak rozpoczęcie przygotowań około 16 roku życia czy wyznaczenie opiekuna do opieki przejściowej. Rekomendacje pokazują, że można pomyślnie przejść z pediatrii na opiekę dla dorosłych, ale potrzeba jeszcze więcej wsparcia i zasobów, aby wszystkie młode osoby mogły z nich skorzystać.
Oryginalny abstract (angielski)
INTRODUCTION: The transition from pediatric to adult health care is a critical yet often challenging process for young adults with chronic conditions, marked by fragmented communication, scarce resources, and a lack of standardized guidelines. The Italian TransiDEA project aimed to address these gaps by developing tailored transition recommendations for three clinical populations: young adults with Attention-Deficit/Hyperactivity Disorder (ADHD), Type 1 diabetes (T1D), or epilepsy. METHODS: Using a Delphi consensus method, three multidisciplinary panels including clinicians, young adults, caregivers, and association members were conducted in parallel, each addressing one of the three clinical targets. Participants assessed and revised the transition guidelines adapted from international frameworks over two rounds of evaluation. RESULTS: After the first round, the overall agreement was above 75% for all three chronic conditions. The changes made to the statements based on the ratings and suggestions, led to high agreement (100%) in the second round. DISCUSSION: The final recommendations share key elements, including early transition planning (starting around age 16), the assignment of a named transition worker, and using standardized tools (e.g., transition readiness questionnaires). Condition-specific adaptations addressed unique needs, such as psychological support in ADHD, tailoring the process on a case-by-case basis depending on the clinical picture in epilepsy, and extended transition timelines (up to age 22) in T1D. CONCLUSION: The TransiDEA project demonstrates the feasibility of structured yet flexible recommendations for transition pathways across chronic conditions, while encouraging systemic improvements to enhance care continuity. Despite these advances, challenges remain, including the need for future validation of the guidelines and tools and increased resource and institutional support to ensure equitable access.