Multidisciplinary Care Model for Differences in Sex Development: An Implementation Research Study

OBJECTIVE: To initiate a multidisciplinary care model for patients with differences in sex development (MD-DSD), assess its implementation, and evaluate changes in perceived quality of care following implementation among parents and health-care providers (HCPs). DESIGN: Implementation research. SETTING: Tertiary care Institute at New Delhi. PATIENTS: Patients aged 0-22 years with DSD, receiving care in single-specialty clinics at the Institute. INTERVENTIONS: A core MD-DSD team comprising specialists from Paediatric Endocrinology, Paediatric Surgery and Psychiatry was formed. Multidisciplinary clinics were conducted monthly, and board meetings for difficult cases were held bi-monthly, with participation from all core and requisite allied specialties. MAIN OUTCOME MEASURES: The primary outcome was successful implementation of MD-DSD clinics and board meetings, defined by representation from all three core specialties. Secondary outcomes included changes in the Perceived Quality-of-Care Questionnaire (PQCQ) scores (administered to parents at baseline and after attending two clinics, score range: 9-45), and perceptions of participating HCPs at study completion. RESULTS: Over 28 months, 28 clinics and 13 meetings were held. A total of 188 patients (46,XX DSD, 69; 46,XY DSD, 104; and sex chromosome DSD, 15) attended the MD-DSD clinics; and 44 of these were also reviewed in MD-DSD meetings, predominantly for concerns relating to gender of rearing and decision on surgical intervention. Participation from all core specialties was present in 26 (93%) clinics and 12 (92%) meetings. The PQCQ scores (N = 79) improved from 32.2 ± 5.7 to 36.4 ± 4.5 (p < 0.001), contributed chiefly by improved parent knowledge and attention to psychosocial needs. The participating HCPs (N = 12/15) believed that the model was sustainable. CONCLUSIONS: The MD-DSD care model was feasible and demonstrated favourable perceived sustainability, with improvement in the perceived quality of care reported by both parents and HCPs.