ESPE Yearbook of Paediatric Endocrinology

J Pediatr Adolesc Gynecol. 2021 Apr;34(2):176–189.e2. doi: 10.1016/j.jpag.2020.11.001 https://www.ncbi.nlm.nih.gov/pubmed/33181339

This study explores the well-being and sexual health needs of contemporary youth with a DSD. It is a small scale, mixed methods study by specialized DSD psychologists-sexologists in a sample of well-educated youth aged 16–21 who attend DSD clinics and/or support groups in the Netherlands.

Studies in adults show an increased risk for diminished sexual well-being and decreased sexual functioning related to having a variation in sexual development. Although many specialized DSD clinics offer mental and sexual health services nowadays to address these difficulties, clinical experience shows that these services are often poorly attended by clients. Thus, studies exploring how these services can be better tailored to clients’ needs are important. This study focuses on the adolescent and transition period.

In this study, participants emphasize the importance of an open climate among all team members to discuss questions and uncertainties about romantic relationships, sexual experiences and dealing with difficulties surrounding feelings of otherness, however without overemphasizing negative aspects of the condition. Those who had not been involved in some of the decision-making steps or who felt they had not been well informed expressed regret about this. Emotional support, mainly from parents and sometimes from peers or from a psychologist was considered important. Importantly, youth who have a DSD highly value contact with peers who have the same or a similar condition as a way of dealing with aspects of their condition.

In summary, this study offers comprehensive information for all multidisciplinary team members about what contemporary youth who have a DSD want to know and learn about their condition during consultations and in their transition phase to adult clinics. As few guidelines exist for psychosocial counselling of DSD youth, this study provides novel and important data.