title: A model of delivering multi-disciplinary care to people with 46 XY DSD.
abstract: In 2006, a consensus statement was jointly produced by the Lawson Wilkins Pediatric Endocrine Society (LWPES) and the European Society of Paediatric Endocrinology (ESPE) concerning the management of disorders of sex development (DSD) [1]. A recommendation provided by this consensus was that evaluation and long-term care for people affected by DSD should be performed at medical centers with multi-disciplinary teams experienced in such conditions. Here we provide our team's interpretation of the 2006 consensus statement recommendations and its translation into a clinical protocol for individuals affected by 46 XY DSD with either female, or ambiguous, genitalia at birth. Options for medical and surgical management, transitioning of care, and the use of mental health services and peer support groups are discussed. Finally, we provide preliminary data to support the application of our model for delivering multi-disciplinary care and support to patients and their families.
authors.affiliation: Pediatric Urology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA. blake-palmer@ouhsc.edu
authors.forename: Blake W
authors.initials: BW
authors.lastname: Palmer
authors.forename: Amy B
authors.initials: AB
authors.lastname: Wisniewski
authors.forename: Traci L
authors.initials: TL
authors.lastname: Schaeffer
authors.forename: Ashwini
authors.initials: A
authors.lastname: Mallappa
authors.forename: Jeanie B
authors.initials: JB
authors.lastname: Tryggestad
authors.forename: Sowmya
authors.initials: S
authors.lastname: Krishnan
authors.forename: Laura J
authors.initials: LJ
authors.lastname: Chalmers
authors.forename: Kenneth
authors.initials: K
authors.lastname: Copeland
authors.forename: Steven D
authors.initials: SD
authors.lastname: Chernausek
authors.forename: William G
authors.initials: WG
authors.lastname: Reiner
authors.forename: Bradley P
authors.initials: BP
authors.lastname: Kropp
mesh_terms: D002662:Child Health Services / Q000458:organization & administration; D019033:Delivery of Health Care, Integrated / Q000458:organization & administration; D058490:Disorder of Sex Development, 46,XY / Q000175:diagnosis* / Q000628:therapy*; D012734:Disorders of Sex Development / Q000175:diagnosis / Q000628:therapy; D004502:Education, Medical, Continuing; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007231:Infant, Newborn; D033183:Interdisciplinary Communication; D008134:Long-Term Care; D008962:Models, Theoretical; D010348:Patient Care Team / Q000458:organization & administration*; D017410:Practice Guidelines as Topic; D011788:Quality of Life