ECEESPE2025 Poster Presentations Multisystem Endocrine Disorders (43 abstracts)
1HELIOS-Klinikum Berlin-Buch, Berlin, Germany; 2Charité Universitätsmedizin Berlin, Clinic for paediatric endocrinology and diabetology, Berlin, Germany
JOINT3886
Background: Since 2019, there have been special centers in Germany that provide guideline-based treatment for girls and women with Turner syndrome (TS). The involvement of paediatric and internal medicine disciplines is a prerequisite for ensuring compliance with examinations and drug therapies during the transition to adulthood. The Clinic for paediatric endocrinology and diabetology at Charité-Universitätsmedizin Berlin and the adults outpatient center for endocrinologic diseases at the HELIOS-Klinikum Berlin-Buch were certified for treating TS patients in 2020 improving health outcomes in TS throughout the lifespan. Transition only started in 2021 due to the covid-pandemia.
Design and Methods: Retrospective analysis of women transferred between paediatric endocrinology at the Charité-Universitätsmedizin Berlin and the adult outpatient clinic for endocrinological diseases at the HELIOS-Klinikum Berlin-Buch. Descriptive analyses included age at transfer, attendance at transfer meetings and subsequent appointments, adherence to hormone and other therapy, and attendance at recommended regular check-ups. Attendance at two visits to the adult outpatient clinic was defined as a successful transition.
Results: Since 2021, all women with TS whose treatment was no longer continued in paediatrics were referred to adult medicine within the Turner Centers transition consultation hours (n = 13). Age at transition visit ranged from 17-21 years (mean 18.8 years). All women had completed school and all but one were in training or a student. Further care in adult medicine was desired. Almost all girls attended the first visit to the adult center (12/13), the overall drop-out rate was 15% (2/13). 100% of the successfully transferred girls with ovarian insufficiency were on regular hormone replacement therapy. All successfully transferred girls received cardiac MRI, whereas referral to specialised outpatient units according to Gravholt consensus recommendations was often lacking. So far, the transition process is not being financed by health insurance for all patients.
Conclusion: The designation of TS centers can improve guideline-based management of women with Turner syndrome across the lifespan. The rate of successful transition in our center is high, as is the rate of women taking their hormone replacement therapy regularly and attending recommended check-ups. This is an important step in the prevention of conditions such as cardiovascular disease and bone disease in women with Turner syndrome.