Recommendations for the Establishment of Disorders/Differences of Sex Development Interdisciplinary Care Clinics for Youth

J Pediatr Nurs. 2017 Nov-Dec:37:79-85. doi: 10.1016/j.pedn.2017.08.032. Epub 2017 Sep 7.


Purpose: Provide recommendations for the development of an interdisciplinary care (IDC) clinic for the treatment of youth with disorders/differences of sex development (DSD). DSD consist of a group of complex congenital medical disorders in which the development of chromosomal, gonadal, or anatomical sex is atypical. Youth with DSD require care from multiple specialized healthcare disciplines, including several medical specialties, surgery, nursing, and mental health.

Method: Recommendations are based on an interdisciplinary care clinic model that allows for a team of relevant professionals who share knowledge, ideas, and responsibility of care. The framework established in this article is based largely on experiences at an established DSD clinic, as well as observations of multiple clinics across the United States.

Results: Preliminary outcome data on clinic adherence to treatment protocol under an IDC model are provided.

Conclusions: To meet the diverse healthcare needs of youth with DSD, comprehensive care clinics are recommended; however, few such clinics exist in the United States. Establishing new comprehensive DSD clinics can be challenging due to the highly unique treatment of DSD, but the current paper expands the literature available to guide clinic development in the United States.

Keywords: Clinic development; DSD; Disorders/differences of sex development; Interdisciplinary care; Multidisciplinary care.

Publication types

  • Comparative Study
  • Review

MeSH terms

  • Adolescent
  • Adolescent Behavior
  • Adolescent Health Services / organization & administration
  • Ambulatory Care Facilities / organization & administration*
  • Delivery of Health Care / organization & administration
  • Disorders of Sex Development / diagnosis*
  • Disorders of Sex Development / epidemiology
  • Disorders of Sex Development / therapy*
  • Female
  • Humans
  • Male
  • Patient Care Team / organization & administration*
  • Pediatric Nursing / standards
  • Practice Guidelines as Topic*
  • Program Evaluation
  • United States