Multi-disciplinary and Transitional Care for Children and Adolescents with Differences in Sex Development (DSD) and Congenital Adrenal Hyperplasia (CAH): Bridging the Gap

Differences in sex development (DSD), including congenital adrenal hyperplasia (CAH) are complex disorders requiring continuation of care from birth through childhood and adolescence to adulthood. Management of CAH/DSD includes several sensitive medical and social issues, starting with the dilemmas of deciding the gender of rearing, the need and timing of genital surgery/gonadectomy, gender identity, sexual orientation, and fertility potential. Thus, multidisciplinary team (MDT) and transitional care services are necessary for the proper management of CAH/DSD. MDT care is important to address age and gender-specific medical and psychosocial issues at different stages in life. In contrast, transitional care is important to minimize problems associated with abrupt ‘transfer’ of care from pediatric to adult services such as fragmented care and loss of follow-up.
Although the necessary expertise may exist, coordination between services to provide MDT and transitional care is not well established, especially in developing countries. Further, there is a scarcity of guidelines and research on multidisciplinary and transitional care in developing nations. Creating specialized centers of excellence with collaboration among the various specialties to provide holistic MDT and transitional care can help optimize care in lower-resource countries. This article discusses challenges faced in establishing multidisciplinary care and transitional care for CAH/DSD and suggestions to overcome them, with special emphasis on developing countries. This review is based on current literature, and our own personal clinical experiences in conducting transition care services for adolescents with CAH/ DSD over the past 2 years, at a tertiary care hospital-based university center in Sri Lanka, a lower-middle-income-country (LMIC) in South Asia