Presentation description

Differences of Sex Development (DSD) are congenital conditions affecting the development of sex chromosomes, gonads, and genital. These rare conditions impact adolescents and young adults (AYAs) with morbidities ranging from life threatening hormone deficiencies to structural differences that can negatively impact psychosocial and psychosexual functioning. Within this context, AYAs also face potentially life-changing medical decisions, including how to manage gonadal and genital differences (i.e., whether to pursue surgery). We hypothesized that community-based interviews with AYAs with DSD, parents/caregivers of an AYA with DSD, and healthcare providers working with this population will guide us toward building surgical decision aids (DAs) that include sexual health education (SHE) resources. We conducted community-based interviews (N=5) with parents/caregivers, and physicians, and AYAs with a DSD. Interview guides facilitated 1-hour virtual interviews about surgical decision making, sexual health education, and DA development. Interview transcripts were organized, cleaned, and de-identified. Nvivo was used for qualitative data analysis. Our preliminary data suggested gaps in the implementation of shared decision making to support AYA decision making. Sexual health education was also inconsistently integrated into clinical care for those with a DSD. Providing a foundation for sexual health education before it is provided through the public education system (5th grade) was also recommended by participants. Finally, participants provided helpful feedback about the development of surgical DAs (e.g., use drawings to supplement text). Our preliminary data standardized surgical DAs that integrate sexual health education resources. These resources can aid in surgical decisions and reduce uncertainty for AYAs with DSD.