Transition of care for adolescents with disorders of sex development

• Published in: Nature reviews. Endocrinology Vol. 10; no. 7; pp. 436 - 442
• Main Authors: Crouch, Naomi S., Creighton, Sarah M.
• Format: Journal Article Book Review
• Language: English
• Published: London Nature Publishing Group UK 01.07.2014; Nature Publishing Group
• Subjects: 692/698/1460/1527; 692/699/2732/2730; 692/699/2743/1526; 692/700/1720; Adolescent; Adult; Adults; Care and treatment; Child; Child development; Clinical outcomes; Cystic fibrosis; Differences of sex development; Disorders of Sex Development - psychology; Disorders of Sex Development - therapy; Endocrinology; Female; Genitalia, Female - abnormalities; Genitalia, Female - anatomy & histology; Health aspects; Health Services Needs and Demand; Hospitals; Humans; Male; Medicine & Public Health; opinion-2; Parents; Patient Satisfaction; Patients; Pediatrics; Physical Examination; Pseudohermaphroditism; Quality of Life; Sex differentiation disorders; Sexual Development; Teenagers; Transition to Adult Care - organization & administration; Youth; United Kingdom
• ISSN: 1759-5029; 1759-5037
• DOI: 10.1038/nrendo.2014.62

Transfer from paediatric to adult health-care services for individuals with a disorder of sex development has specific issues that can impede continuity of care. Here, Crouch and Creighton discuss these barriers, and propose that a long-term plan with psychological support at each stage of transition could ensure successful transfer for these patients. Disorders of sex development (DSDs) continue to present many challenges. A clear consensus among clinicians has emerged in paediatric care; however, the same cannot be said of adult care services. Moreover, transition to adult care is a process that takes many years. Although evidence-based models of transitional care do exist in other medical specialities, few studies have been conducted in adolescents with DSDs, and a clear and pressing need exists for further research to guide the care of these patients. A general move towards independence and self-responsibility is common to all transition programmes, but specific issues for those with a DSD include disclosure, genital examinations and potential vaginal treatments. Psychological support underpins the whole transition process for patients with a DSD and encourages an individual approach to develop. In this Perspectives article, we describe the barriers to successful transition in this setting and outline suggestions to overcome them.