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Semin Pediatr Surg. 2019 Oct;28(5):150838. doi: 10.1016/j.sempedsurg.2019.150838. Epub 2019 Sep 13.

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

Author information

1
Department of Pediatrics, Child Health, Evaluation and Research (CHEAR) Center, University of Michigan, 300 N Ingalls Bldg, 6C23, Ann Arbor, MI 48109, United States. Electronic address: dsandber@med.umich.edu.
2
Department of Pediatrics, Child Health, Evaluation and Research (CHEAR) Center, University of Michigan, 300 N Ingalls Bldg, 6C23, Ann Arbor, MI 48109, United States.
3
Temple University, United States.
4
Social and Behavioral Sciences, Temple University, United States.
5
Department of Pediatrics, Child Health Evaluation and Research (CHEAR) Center, Belgian American Educational Foundation (BAEF Inc), University of Michigan, United States.
6
Department of Human Genetics, University of Michigan, United States.
7
Division of Endocrinology, Seattle Children's Hospital, United States.
8
Department of Urology, Division of Pediatric Urology, Seattle Children's Hospital, University of Washington, United States.
9
Children's National Health System, Center for Genetic Medicine Research, Children's Research Institute, United States.
10
Department of Sociology, University of California Los Angeles, United States.
11
Department of Social and Behavioral Sciences, College of Public Health, Temple University, United States.

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.

KEYWORDS:

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

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