IDSD2026 Poster Abstracts Poster Abstracts (93 abstracts)
Standardized multidisciplinary care program for children and adolescents with differences of sex development: experiences in the first year following implementation
Lieve A. Willemsen 1,2,3 , Matthijs Stoter 2 , Emmy van den Boogaard 3,4 , Stephanie Both 3,5 , Luitzen A. Groen 3,6 , Baudewijntje P. C. Kreukels 3,7 , Kimberly C. Kuiper 8 , Julia N. Nieuwersteeg 3,9 , Noortje A. Roussel 3,5 , Liesbeth van der Sluijs Veer 3,9 , Annelou L.C. de Vries 3,9 , Petra J.G. Zwijnenburg 3,10 , Martin den Heijer 3,11 , Jaap Oosterlaan 2,12 , Sabine E. Hannema 1,3 & On behalf of the Follow Me DSD study group
1Department of Pediatric Endocrinology, Emma Children’s Hospital, Amsterdam UMC location University of Amsterdam, Amsterdam, The Netherlands; 2Follow-Me program & Emma Neuroscience Group, Department of Pediatrics, Emma Children’s Hospital, Amsterdam UMC location University of Amsterdam, Amsterdam, The Netherlands; 3Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands; 4Department of Obstetrics and Gynaecology, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands; 5Department of Sexology and Psychosomatic Gynecology, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands; 6Department of Urology, Emma Children’s Hospital, Amsterdam UMC location University of Amsterdam, Amsterdam, The Netherlands; 7Department of Medical Psychology, Amsterdam UMC location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands; 8TRIXY Center of Expertise, Leiden University Treatment and Expertise Center (LUBEC), Leiden, The Netherlands; 9Department of Child and Adolescent Psychiatry and Psychosocial Care, Emma Children’s Hospital, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands; 10Department of Human Genetics, Amsterdam UMC location University of Amsterdam, Amsterdam, The Netherlands; 11Department of Endocrinology and Metabolism, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands; 12Clinical Neuropsychology Section, Vrije Universiteit Amsterdam, Amsterdam, Netherlands. Correspondence to: [email protected]
Background: In March 2025, we launched a structured, multidisciplinary follow-up program for children and adolescents with differences of sex development (DSD). The program aims to facilitate data-driven outcome evaluation and scientific research to further improve quality of care. This study describes our experiences during the first year following implementation.
Methods: The program comprises three structured care pathways for patients with (1) XX and XY DSD, (2) Turner syndrome, and (3) sex chromosome trisomies. Following implementation, several evaluation meetings were conducted with the core team, as well as two evaluation sessions with the broader multidisciplinary team (MDT). During these meetings, we identified challenges and key factors for successful implementation.
Results: Two main challenges emerged. First, complete data registration in the electronic health record was difficult within the simultaneous consultation model, where all clinicians see the patient together. Second, patient-reported questionnaires to support consultation preparation initially had low completion rates due to technical problems and limited awareness among families. Education and training of clinicians in use of structured consultation forms, and ensuring adequate technical equipment, improved data registration. Information on the importance and rationale of the questionnaires, as well as practical information on use of the digital portal was provided to patients and parents. A dedicated planner was assigned, reminding families to complete the questionnaires sent prior to the consultation. In these questionnaires, patients and parents indicated concerns and/or questions they wished to discuss, e.g. regarding gonadal surgery, timing of hormonal therapy, fertility and sexual function. Clinicians reported that with this information they felt well prepared and better able to focus on the most relevant issues during the consultation, contributing to improved quality and efficiency of care. The interactive dashboards provided real-time feedback on adherence to the structured care paths, data quality and patient outcomes. Evaluating these outcomes was highly motivating for the MDT to optimize data registration.
Conclusion: This evaluation demonstrated that our structured, multidisciplinary follow-up program for children and adolescents with DSD is feasible. Continuous evaluation and optimization are essential to maintain high quality, effective care. These insights may guide the development of similar programs in other healthcare settings.
Volume 118
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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