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

Area of Science:

• Medical Ethics
• Pediatric Endocrinology
• Health Communication

Background:

• Decisions regarding the clinical care of children with Disorders of Sex Development (DSD) are complex due to irreversible consequences and decisions made before patient participation.
• Effective shared decision-making (SDM) is crucial but challenging in DSD care, impacting long-term physical and mental health outcomes.

Purpose of the Study:

• To develop and assess a web-based decision support tool (DST) for parents and clinicians managing DSD in young children.
• To evaluate the impact of the DST on communication and decision-making processes between DSD specialists and parents.
• To gather stakeholder feedback for optimizing the DST and its integration into routine clinical workflows.

Main Methods:

• A multi-stage study involving DST development, assessment of communication pre- and post-DST introduction, and stakeholder interviews.
• Utilized a web-based platform for the decision support tool.
• Qualitative interviews were conducted with diverse stakeholders to inform DST refinement and implementation strategies.

Main Results:

• The study identified a need for further DST refinement to enhance acceptability across all stakeholder groups.
• Provider misperceptions regarding existing SDM practices and parent misunderstandings about decision necessity were highlighted.
• Integration into regular clinic workflow requires specific strategies for effective DST incorporation.

Conclusions:

• A decision support tool shows promise for improving DSD care but requires further development for optimal stakeholder acceptance and integration.
• Addressing provider and parent misconceptions is essential for successful implementation of SDM in DSD management.
• Future efforts should focus on refining the DST and embedding it seamlessly into clinical practice for enhanced child and family centered care.