Defining Successful Outcomes in Disorders (or Differences) of Sex Development

Project start and end dates: September 2016 - June 2023

Background:
Disorders (or differences) of Sex Development are congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. Clinical management of DSD is in a state of flux with disagreements within and between professional, advocacy, and patient communities about what is “optimal” care; i.e., the “best” ways to achieve the “best” outcomes. Specific topics triggering contentious debate include decision-making over gender of rearing, genital surgery and its timing, gonad removal, and disclosing diagnostic details to patients.

Objectives:
This project seeks to systematically evaluate how patients with DSD, parents, healthcare providers, and other stakeholders differentially value optimal care and to develop research-based educational curricula for stakeholders to acquire knowledge and attitudes to promote the development of resilience among patients affected by DSD.

Research Topics & Methods:
We will (1) assess the importance ascribed by stakeholders to DSD clinical management options (i.e., identify what constitutes a “successful outcome”), both immediately and in the future using qualitative interviews; (2) Identify differential trade-off preferences (e.g., trade-offs between genital appearance, preserving fertility, sexual function, privacy, patient autonomy) and choice processes made by different stakeholder groups using survey methodology; and (3) Design and pilot evidence-based curricula for stakeholders that clarify priorities, and integrate these with evidence to facilitate informed and shared decision-making.

Collaborators on this project include CHEAR faculty and affiliates (Lisa Prosser and David Hanauer), faculty of the Department of Learning Health Sciences (Larry Gruppen), and colleagues at Cincinnati Children's Hospital Medical Center and Phoenix Children's Hospital.