Individuals with disorders of sex development (DSD) often report decreased satisfaction with health care and are at risk for psychological comorbidities including depression and anxiety. While current guidelines state that the interdisciplinary care of DSD patients should include psychosocial services, knowledge gaps limit the ability of healthcare providers to provide anticipatory guidance and promote positive psychosocial outcomes. A better understanding of these factors is therefore needed to inform the clinical management of patients with DSD. The current study networks two pediatric academic sites with dedicated interdisciplinary DSD programs, both with access to adult medical centers as well (Nationwide Children's Hospital/The Ohio State University Medical Center; Boston Children's Hospital/Brigham and Women's Hospital/Massachusetts General Hospital). A mixed- methods research design will be used to investigate mediators and moderators of positive outcomes in individuals with DSD ages 12-35 years. We will examine diagnosis-related factors, including age at which diagnosis-related information was first shared with the individual, fertility status, and perceived genital appearance as they relate to resilience, psychosocial adjustment, and quality of life in adolescents and adults. We will examine potential diagnosis-related and developmental mediators (satisfaction with clinician communication; healthy family functioning; family and peer acceptance; body image) and moderators (age of diagnosis; desire for biological children; congruence between gender assignment and gender identity) of psychosocial outcomes. Our goal is to develop a clinically useful paradigm for fostering well-being in youth and young adults with DSD. The mixed-methods approach will also enable us to examine themes related to medical factors unique to specific DSD conditions, and to understand nuanced aspects of interactions with providers, consent and control over medical care, family dynamics, fertility status, and intimacy along the developmental spectrum.
Current guidelines recommend that the interdisciplinary care of DSD patients include psychosocial services. However, knowledge gaps limit the ability of healthcare providers to provide anticipatory guidance and promote positive psychosocial outcomes. The goal of the proposed research is to conduct a cross-sectional study using a mixed-methods qualitative and quantitative approach to examine diagnosis-related and general developmental factors associated with resilience, quality of life and psychosocial adjustment.
