Background:
The Differences in sex development (DSD) clinical coordinator (CC) role began in 2016 to facilitate clinical coordination and psychosocial support of individuals living with DSD and their families at the Royal Children’s Hospital, Melbourne. Here, we report on the impact of the role on service delivery and its current vital components.
DSD Multidisciplinary team (MDT):
Formal DSD MDT meeting coordination by the CC has resulted in many benefits. The joint monthly meeting across two paediatric centres in Melbourne has increased clinical participation, which now includes over 35 specialists and further encompasses clinicians from regional Australian and international centres.
Clinical coordination:
The CC supports families through paediatric and adolescent care, transitioning into adulthood, and increasingly in the prenatal setting. Common CC support includes appointment coordination (multiple specialists), translation of health information, and referral for psychosocial services including peer support. The CC has a 410+ patient load and provides psychosocial support for 4-15 patients and their families per day.
Stakeholders:
The CC is a central liaison point for a broad range of stakeholders. This includes providing expert advice for government intersex advisory groups and other organisations, developing relationships with peer support groups, and membership in clinical and academic organisations.
Research and education:
To promote evidence-based care, the CC has led projects and collaborated with research teams, identifying the health gaps and priorities for this community. As a member of a Reproductive Development Research Laboratory, the CC liaises with participants and encourages connections between clinical groups and researchers.
Informed by individuals’ lived experiences, the CC has developed online resources available in different formats and has provided DSD education for external organisations such as schoolteachers, book authors, and midwives.
The CC raises awareness of DSD/intersex variations in the community, promoting better outcomes for individuals and their families.