Identifying the Resource Needs of Young People with Differences of Sex Development

Abstract

Adolescents with differences of sex development (DSD) often have complex medical, surgical, and psychological care needs and require age-appropriate resources. This cross-sectional study describes the past and current experiences of adolescents and young adults with DSD and their need for information and support. Participants aged 14−30 years with DSD diagnoses were identified, either from departmental records at the Royal Children’s Hospital (RCH), Melbourne, Australia, or from the private practice of a gynecologist linked to RCH. Anonymized data were collected from a specifically designed online survey. Of the 314 successfully traced patients, 91 (28.9%) completed the survey. Amongst respondents, older age was strongly correlated with higher levels of distress at the time of disclosure (b = 0.67, p < 0.001). People who reported greater understanding of their condition (b = −0.45, p = 0.010) and higher levels of support (b = −0.40, p = 0.003) identified lower levels of current distress. Respondents preferred to receive information from a specialist doctor, GP, or websites and reported information needs being highest during adolescence. Only one in four respondents recalled ever being offered psychological support. A number of perceived barriers to accessing support were identified. Our findings indicate that young people’s information and support needs may be best met by improving online resources, as well as increasing introductions to knowledgeable and appropriate primary care physicians, psychological services, and peer support groups. Further work to promote and increase engagement with psychological and peer support for those with DSD will be important.

Keywords: adolescent; differences of sex development; disclosure; intersex; patient satisfaction; psychological support systems; social support; young adult.

Figure 1

Health professionals that people would “at any stage have liked to have seen” but have not seen in the past or currently (X² = 61.6, p < 0.0001).

Figure 2

(a) Age at which participants would have liked to see any additional health professionals (X² = 26.1, p < 0.0001). (b) Age at which participants would have liked to access additional information (X² = 59.4, p < 0.0001).