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 tha...

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Bibliographic Details
Published in:Journal of pediatric urology 2012-02, Vol.8 (1), p.7-16
Main Authors: Palmer, Blake W, Wisniewski, Amy B, Schaeffer, Traci L, Mallappa, Ashwini, Tryggestad, Jeanie B, Krishnan, Sowmya, Chalmers, Laura J, Copeland, Kenneth, Chernausek, Steven D, Reiner, William G, Kropp, Bradley P
Format: Article
Language:English
Subjects:
46 XY DSD
46, XY Disorders of Sex Development - diagnosis
46, XY Disorders of Sex Development - therapy
Child Health Services - organization & administration
Delivery of Health Care, Integrated - organization & administration
Disorders of Sex Development - diagnosis
Disorders of Sex Development - therapy
DSD clinic
DSD management
Education, Medical, Continuing
Female
Follow-Up Studies
Humans
Infant, Newborn
Interdisciplinary Communication
Long-Term Care
Models, Theoretical
Multidisciplinary care
Patient Care Team - organization & administration
Pediatrics
Practice Guidelines as Topic
Quality of Life
Surgical management
Urology
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Summary: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.
ISSN:1477-5131
1873-4898
DOI:10.1016/j.jpurol.2011.08.013