Development of a decision support tool in pediatric Differences/Disorders of Sex Development

David E. Sandberg, Melissa Gardner, Kristin Kopec, Megan Urbanski, Nina Callens, Catherine E. Keegan, Beverly M. Yashar, Patricia Y. Fechner, Margarett Shnorhavorian, Eric Vilain, Stefan Timmermans, Laura A. Siminoff

Research output: Contribution to journalArticlepeer-review

24 Scopus citations

Abstract

Decisions about how best to clinically care for young children born with Disorders of Sex Development (DSD) can be challenging because some decisions are irreversible, have lasting physical and mental health effects, and are frequently made before the affected person is able to participate in decision-making. This multi-stage study involved (1) the development of a web-based decision support tool (DST) for parents of infants or young children and the clinicians caring for them; (2) the assessment of communications and decision making between DSD specialists and parents both before and after introduction of the DST; and (3) interviews with a broad range of stakeholders regarding optimizing the DST and integrating it into usual care. Experience over the course of the 3 stages of this research suggests the need for further refinement of the DST to increase acceptability to all stakeholder groups, the necessity to address misperceptions by providers that they are already accomplishing all aspects of SDM in regular care without a DST and misunderstandings by parents that decisions are unnecessary because only a single option is apparent, and to better incorporate the tool into regular clinic workflow.

Original languageEnglish
Article number150838
Pages (from-to)150838
JournalSeminars in Pediatric Surgery
Volume28
Issue number5
DOIs
StatePublished - Oct 2019

Keywords

  • Decision support tool
  • Disorders of Sex Development
  • Shared decision-making

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