Approach to the patient: comprehensive multidisciplinary care for adolescents with difference in sex development (DSD)

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Authors: Hedi L. Claahsen-van der Grinten, Antonius Van Herwaarden, Marlies Kempers, Willemijn M. Klein, Letty van der Molen, Marian A. Spath, Dineke Westra
Cited by: 2
References: 49

Abstract

Disorders (or differences) of sex development (DSD) represent a broad spectrum of rare congenital conditions characterized by atypical development of chromosomal sex, gonadal differentiation, or internal and/or external genital anatomy. Although some individuals are identified in early life, a substantial proportion first present during adolescence, frequently with delayed or absent pubertal development, primary amenorrhea, virilization, or questions regarding gender identity or fertility. This sensitive developmental phase is accompanied by increasing autonomy, necessitating a patient-centered approach with transparent communication and shared decision-making. In this paper, we describe our structured, stepwise diagnostic pathway for adolescents presenting with suspected DSD, embedded within a specialized multidisciplinary team including pediatric endocrinology, laboratory medicine, clinical genetics, psychology, radiology, and surgical expertise. Advances in biochemical profiling, imaging techniques, and genetic testing have improved diagnostic accuracy; nonetheless, psychosocial guidance remains essential throughout the process to support understanding, coping, and long-term well-being. To contextualize this approach, we present an illustrative adolescent case highlighting key clinical considerations, communication strategies, and the specific roles of each team member. Through this case-based framework, we aim to provide clinicians with clear and clinically applicable guidance for the coordinated evaluation and management of adolescents with DSD, emphasizing individualized, developmentally appropriate and gender-affirming care.

Fields of Study & Subjects

Sexual Differentiation and Disorders Urological Disorders and Treatments Genetic and Clinical Aspects of Sex Determination and Chromosomal Abnormalities

Publication details

Journal / source
The Journal of Clinical Endocrinology & Metabolism
Publisher
The Endocrine Society
Volume
111
Issue
4
Pages
e1183–e1194
Publication date
21 January 2026
Language
EN