Sucessful Transition in Rare Endocrine Diseases: Patient Experiences in a French Reference Centre
Authors' 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.
Study context
- Population
- Patients with rare endocrine disorders who had a joint endocrinology consultation for transition to adult care at Marseille university hospitals, 2010–2020; mean age 18.8 years at transition consultation81 respondents
- Participants
- 115 patients
- Outcome
- Transition experience
Methodological detailsquestionnaire survey, single-centre
- Questionnaire survey
- Single-centre
Main finding
As reported in the abstract
Continued adult care after first joint consultation
96%
110/115
Still in follow-up when completing questionnaire (mean follow-up 4.5 years)
75%
Satisfied with transition (of 81 respondents)
89%
Reported no difficulties (of 81 respondents)
64%
Observational data: associations, not effects.
Further findings
Timing of transition
- Right time (of 74 respondents)
- 53 (72%)
- Too early
- 17 (24%)
- Too late
- 4 (5%)
Difficulties and concerns
- Most common difficulties were psychological, logistical and medical
- Main concern was transmission of medical information between doctors
- Suggestions: more joint consultations and personalized transition pathways
Original publication
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