Transition from pediatric to adult surgery care for patients with disorders of sexual development

Abstract

Disorders of sexual development (DSDs) are relatively rare congenital conditions in which the development of the chromosomal, gonadal, or anatomic sex is atypical. Some conditions may not manifest until puberty or adulthood. The examination and workup of either an infant or an older patient with suspected DSD should be directed and performed systematically by a multidisciplinary team. Ideally, the team will include those with not only an interest in DSD but also experience with this group of patients. This article will briefly orient the reader to the conditions and decisions that may have been made during infancy, childhood, and adolescence and then focus on the challenges that may accompany transitioning the care of DSD patients from pediatric to adult surgeons and specialists to enable appropriate decisions and care. The actual transition will optimally involve a well-developed action plan that will take place gradually over a number of years as the person becomes educated about their condition and empowered to participate knowingly and actively in their own care.