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

Abstract

Objective: 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.

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

Results: 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.

Conclusion: 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.