TY - JOUR
T1 - Development of a decision support tool in pediatric Differences/Disorders of Sex Development
AU - Sandberg, David E.
AU - Gardner, Melissa
AU - Kopec, Kristin
AU - Urbanski, Megan
AU - Callens, Nina
AU - Keegan, Catherine E.
AU - Yashar, Beverly M.
AU - Fechner, Patricia Y.
AU - Shnorhavorian, Margarett
AU - Vilain, Eric
AU - Timmermans, Stefan
AU - Siminoff, Laura A.
N1 - Copyright © 2019 Elsevier Inc. All rights reserved.
PY - 2019/10
Y1 - 2019/10
N2 - 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.
AB - 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.
KW - Decision support tool
KW - Disorders of Sex Development
KW - Shared decision-making
UR - http://www.scopus.com/inward/record.url?scp=85072615415&partnerID=8YFLogxK
U2 - 10.1016/j.sempedsurg.2019.150838
DO - 10.1016/j.sempedsurg.2019.150838
M3 - Article
C2 - 31668291
AN - SCOPUS:85072615415
SN - 1055-8586
VL - 28
SP - 150838
JO - Seminars in Pediatric Surgery
JF - Seminars in Pediatric Surgery
IS - 5
M1 - 150838
ER -