Challenges in Care Provision for Children and Adolescents With Differences of Sex Development.

OBJECTIVES

The ideal model of care for individuals with Differences of Sex Development (DSD) continues to evolve, with multiple models proposed. This study aimed to explore current care models for individuals with DSD in Australia and New Zealand (NZ) and to identify clinician perceptions of gaps and barriers in current practice.

METHODS

Cross-sectional anonymous online questionnaire, conducted via Research Electronic Data Capture (REDCap) software. Clinicians involved in the diagnosis and management of individuals with DSD in Australia and NZ were contacted through multimodal recruitment approaches. Themes included demographics of respondents, preferred terminology, composition of the DSD multidisciplinary team (MDT) and availability of a database.

RESULTS

Seventy-nine eligible participants from centers in all states and territories of Australia and NZ commenced the survey with 63 complete responses. Almost One-third (31%) of participants are not currently part of a DSD MDT meeting at their center. While three quarters (76%) of respondents identified changes to DSD care over the past 5 years, three quarters (75%) also identified barriers to current care provision. Only 20% of respondents reported psychology being a current part of their MDT and 70% identified psychology as a desired but missing part of their team.

CONCLUSIONS

Responses to the survey identify gaps and barriers to DSD care across Australia and NZ, particularly a lack of psychosocial supports. Current models fall short of international recommendations and services need to explore the reasons for these gaps further.