Adolescent girls with disorders of sex development: A needs analysis of transitional care

Abstract 

Objective

To collect information on clinical concerns relating to adolescent girls with disorders of sex development (DSD) during the process of transition from paediatric-to-adult clinical services.

Subjects and methods

This was a prospective audit of the clinical indications for referral and on-going clinical needs for all girls aged 12–20 years seen in a specialist DSD clinic over a 6-month period. Clinical needs were classified according to level of urgency using a simple ‘traffic light’ classification: green for low, amber for moderate, and red for high.

Results

Fifty girls were seen during the study period and all were referred from paediatric services. Patients may have had one or more indication(s) for referral to the adult clinic and these were: urology/gynaecology (70%), endocrinology (42%) and psychology (14%). The most common indication for on-going clinical input was psychology, with 46% of patients requiring monitoring and intervention. Of the 14 patients (28%) classified red suggesting they had an urgent clinical need, psychology was a major factor in all but one patient.

Conclusion

Clinicians working with adolescents with DSD need to develop a co-ordinated programme for transitional care that recognises the importance of psychological input within the multi-disciplinary team.

Keywords: Adolescent, Disorder of sex development, Transition