ESPE2024 Poster Category 1 Sex Endocrinology and Gonads 1 (8 abstracts)
1Department of Internal Medicine and Pediatrics, Pediatric Endocrinology Service, Ghent University Hospital, Ghent, Belgium. 2Department of Pediatrics, Amsterdam University Medical Centers, Location Vrije Universiteit, Amsterdam, Netherlands. 3Department of Pediatric Endocrinology, Radboud University Medical Centre, Nijmegen, Netherlands. 4Department of Medicine, Division of Endocrinology, Leiden University Medical Center, Leiden, Netherlands. 5Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, United Kingdom
Background: Access to transgender healthcare for adolescents varies largely across Europe (and beyond), depending on the regulations and healthcare system of the country where they live. In some countries, obtaining transgender healthcare can be almost impossible. Specifically, the age at which puberty suppression (PS) and subsequent gender-affirming hormones (GAH) are offered can vary widely. Medical treatment for adolescents with gender incongruence (GI) is subject of debate and there is a need for long-term outcome data.
Methods: A condition-specific module on GI within the EuRRECa Core Registry was started in October 2023, to collect information to map transgender healthcare across Europe and open the possibility for more extensive long-term follow-up research on long-term outcomes. The acquisition of informed consent from the adolescents and parents (for minors) is mandatory. A pilot study was conducted until April 2024, after which the official data collection started.
Results: Two centers participated in the pilot study (Ghent, Belgium, and Amsterdam, Netherlands). Ninety patients consented to participate, of whom 20 had been registered male at birth (RMAB) and 70 registered female at birth (RFAB). Nighty-four percent accepted to be contacted for research purposes, and 83% to be contacted to collect patient outcomes. Seventy-two percent of registered patients opted for having access to the registry but only 47% gave consent to receive the newsletter. Investigated outcomes were: age at first consultation with a pediatric endocrinologist within the gender team; percentage of adolescents starting PS and GAH; age, Tanner stage, and selected medication before starting PS and GAH. Information about the presence of mental health comorbidities, use of fertility preservation options, transition to adult care, gender-affirming surgery and detransition were also collected. While the pilot study was running, other centers across Europe and affiliated to Endo-ERN and/or the ESPE transgender working group applied for local Ethics Committee approval. Next data extraction is planned in October 2024 with the aim to present more extensive data.
Conclusion: Transgender health promotion (especially for adolescents) has rapidly expanded in the last decade. Despite this increased awareness of the needs of transgender and gender diverse youth, access to care across Europe is far from homogenous. Through the creation of a common international registry, we not only aim to collect standardized natural history data but also enhance the collaboration of healthcare providers in different countries and eventually improve the healthcare offered to transgender and gender diverse youth, with acquisition of data on long-term outcomes.