Sucessful Transition in Rare Endocrine Diseases: Patient Experiences in a French Reference Centre

This study aimed to evaluate the experiences of patients who had a joint endocrinology consultation for transition to adult care at Marseille university hospitals between 2010 and 2020, focusing on patient follow-up, satisfaction, difficulties, and expectations.

A healthcare transition questionnaire was designed and administered to patients several years after transition to adult care.

One hundred and fifteen patients with rare endocrine disorders were included, with a mean age of 18.8 years at the transition consultation. Ninety-six percent (110/115) continued adult care after the first joint consultation, and 75% were still in follow-up when completing the questionnaire (mean follow-up, 4.5 years). Of the 81 respondents, 89% were satisfied with the transition, and 64% reported no difficulties. The most common difficulties were psychological, logistical, and medical. Fifty-three out of 74 respondents (72%) felt the transition occurred at the right time, 17 (24%) thought it was too early, and 4 (5%) felt it was too late. The main concern was the transmission of medical information between doctors. Suggestions for improvement included more joint consultations and personalized transition pathways.

In this group of rare endocrine disease patients, a transition pathway based on a joint pediatric-adult consultation was associated with high patient satisfaction and long-term follow-up rates. Patients' suggestions and reported difficulties highlight issues to be addressed and complementary strategies to develop.