Kreukels, Baudewijntje P.C., Köhler, Birgit, Nordenström, Anna, Roehle, Robert, Thyen, Ute, Bouvattier, Claire, de Vries, Annelou L.C., Cohen-Kettenis, Peggy T., Arlt, Wiebke, Wiesemann, Claudia, Slowikowska-Hilczer, Jolanta, de la Perriere, Aude Brac, Sultan, Charles, Paris, Francoise, Reisch, Nicole, Richter-Unruh, Annette, Claahsen-van der Grinten, Hedi, Pienkowski, Catherine, Szarras-Czapnik, Maria, Hôpital Bicêtre, Université Paris-Sud - Paris 11 (UP11)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Bicêtre, Institut de Recherche en Cancérologie de Montpellier (IRCM - U1194 Inserm - UM), CRLCC Val d'Aurelle - Paul Lamarque-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM), Medical psychology, APH - Aging & Later Life, APH - Mental Health, Amsterdam Reproduction & Development (AR&D), Pediatric surgery, APH - Quality of Care, NCA - Neurobiology of mental health, VU University medical center, and APH - Personalized Medicine
Background Information on the psychosexual outcome of individuals with disorders of sex development (DSDs) and intersex conditions is of great importance for sex assignment at birth of newborns with DSD. Aim To assess gender change and gender dysphoria in a large sample of individuals with different DSDs. Methods A cross-sectional study was conducted in 14 European centers with 1,040 participants (717 female-identifying and 311 male-identifying persons and 12 persons identifying with another gender) with different forms of DSD. The cohort (mean age = 32.36 years, SD = 13.57) was divided into 6 major subgroups: women with 45,X DSD and variants (Turner syndrome; n = 325), men with 47,XXY DSD and variants (Klinefelter syndrome; n = 219), women with XY DSD without androgen effects (n = 107) and with androgen effects (n = 63), men with XY DSD (n = 87), and women with 46,XX congenital adrenal hyperplasia (n = 221). Data on psychosexual outcome were gathered by medical interviews and questionnaires. Outcomes Gender change and gender dysphoria. Results Although gender changes were reported by 5% of participants, only in 1% (3% if those with Klinefelter and Turner syndromes—conditions in which gender issues are not prominent—are excluded) did the gender change take place after puberty and was likely initiated by the patient. 39 participants (4%) reported gender variance: between male and female, a gender other than male or female, or gender queer, alternating gender roles, or a gender expression that differed from the reported gender. This group had lower self-esteem and more anxiety and depression than the other participants. Clinical Implications Clinicians should be aware of and sensitive to the possibility that their patients with DSD not only might have transgender feelings and a desire to change gender, but also identify as different from male or female. The complexity of their feelings might require counseling for some patients. Strengths and Limitations The study is unique in the large number of participants from many different clinics, with sizable numbers in most subgroups, and in the large number of aspects that were measured. However, the very broadness of the study made it impossible to focus in detail on gender issues. Also, there is a need for instruments specifically measuring gender dysphoria in individuals with DSD that take non-binary genders into account. Conclusion To make appropriate gender care possible for people with DSD, the gender-normative and gender-variant development of children with DSD should be studied in longitudinal studies.