Journal of Pediatric Urology
Volume 8, Issue 1 , Pages 7-16, February 2012

A model of delivering multi-disciplinary care to people with 46 XY DSD

  • Blake W. Palmer

      Affiliations

    • Pediatric Urology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • Corresponding Author InformationCorresponding author.
    • ,
  • Amy B. Wisniewski

      Affiliations

    • Pediatric Endocrinology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • ,
  • Traci L. Schaeffer

      Affiliations

    • Pediatric Endocrinology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • ,
  • Ashwini Mallappa

      Affiliations

    • Pediatric Endocrinology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • ,
  • Jeanie B. Tryggestad

      Affiliations

    • Pediatric Endocrinology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • ,
  • Sowmya Krishnan

      Affiliations

    • Pediatric Endocrinology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • ,
  • Laura J. Chalmers

      Affiliations

    • Pediatric Endocrinology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • ,
  • Kenneth Copeland

      Affiliations

    • Pediatric Endocrinology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • ,
  • Steven D. Chernausek

      Affiliations

    • Pediatric Endocrinology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • ,
  • William G. Reiner

      Affiliations

    • Pediatric Urology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA
    • ,
  • Bradley P. Kropp

      Affiliations

    • Pediatric Urology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA

Received 10 February 2011; accepted 31 August 2011. published online 11 November 2011.

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.

Keywords: DSD management, 46 XY DSD, DSD clinic, Surgical management, Multidisciplinary care

 

PII: S1477-5131(11)00220-8

doi:10.1016/j.jpurol.2011.08.013

Journal of Pediatric Urology
Volume 8, Issue 1 , Pages 7-16, February 2012

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