Transition to Adult Care in Persons With Disorders of Sexual Development

Abstract

Disorders of sexual development (DSD) are a spectrum of conditions diagnosed in infancy due to atypical development of the external genitalia, in adolescence due to atypical pubertal development, or in adulthood due to infertility. Obstetricians may be the first providers to identify a DSD in the fetus or newborn, and should be part of the interdisciplinary team assembled to best care for these patients. Gynecologists must be familiar with the diagnosis and management of these conditions in late adolescence and adulthood. The creation of DSD “centers of excellence” may provide optimal care for individuals with these conditions but many will live too far from such centers and need to be followed by local gynecologists. The purpose of this commentary is to emphasize important medical and psychological issues so gynecologists can provide optimal care for their patients with DSD conditions.

Challenges and Opportunities in Adolescent Gynecology Patients with Surgically-Treated Congenital and Acquired Anomalies: Transition of Care from Pediatric to Adult Surgery

“…The transition of care of these patients will encompass a multistep process. One of the first steps in preparation for 19,22 There is no evidenced-based information regarding how to transition patients with reproductive issues. However, on the basis of the American Academy of Pediatrics general recommendations for transition of care in the context of chronic illness, 13,14 Hullman et al 10 suggests a strategy for transitioning cognitively normal DSD patients from pediatric to adult providers that involves a sequential process beginning at ages 12-13 years and concluding between the ages of 18-21 years.…”

Under-reported aspects of diagnosis and treatment addressed in the Dutch-Flemish guideline for comprehensive diagnostics in disorders/differences of sex development

“…Paediatric and adult teams need to collaborate closely to facilitate a well-organised transition from paediatric to adult specialist care 15 48–50. Both teams need to exchange information optimally and should consider transition as a longitudinal process rather than a fixed moment in time.…”

Congenital Adrenal Hyperplasia

“…Unfortunately, some patients may have accumulated negative experiences due to multiple genital examinations, inadequate knowledge about CAH, and stigmatization regarding their disorder; these patients may find it difficult to trust health care professionals. 111,112 …”