Promoting Shared Decision Making in Disorders of Sex Development (DSD): Decision Aids and Support Tools.

Area of Science:

• Medical Ethics
• Pediatric Endocrinology
• Patient Advocacy

Background:

• Adults with disorders of sex development (DSD) report significant distress stemming from inadequate information, stigmatization, and negative experiences with medical interventions.
• Key grievances include misinformation about their condition, shame due to secrecy, and poor sexual function attributed to surgical procedures and examinations.

Purpose of the Study:

• To propose the implementation of shared decision-making (SDM) in the care of children with DSD.
• To advocate for the use of decision aids and support tools to facilitate informed choices aligned with patient values.

Main Methods:

• Review of historical and current DSD decision-making practices.
• Exploration of shared decision-making principles and decision-support tools.
• Inclusion of a case study to illustrate the proposed approach.

Main Results:

• Current DSD care models often lead to patient dissatisfaction and distress.
• Shared decision-making, supported by decision aids, offers a framework for more patient-centered care.
• This approach has the potential to enhance patient confidence and reduce decision-related regret.

Conclusions:

• Revising the decision-making process for DSD is crucial.
• Operationalizing shared decision-making with decision aids can empower patients and families.
• This patient-centered approach can improve outcomes and satisfaction in DSD management.