Parental Anxiety in Differences of Sex Development and Hypospadias: A Psychosocial Characterization

Abstract Context Parents of children with differences of sex development (DSD) and hypospadias experience significant psychological distress, but the factors contributing to parental anxiety remain poorly understood. Objective Identify psychosocial factors associated with anxiety among parents of children with urogenital conditions and compare anxiety levels to parents in other pediatric settings. Design Cross-sectional survey study. Setting Pediatric subspecialty clinics at an academic medical center. Participants 108 parents of children with urogenital conditions without established genetic diagnoses, compared with 346 parents from BabySeq, a newborn genomic sequencing trial (278 parents of healthy newborns, 68 parents of NICU infants). Main Outcome Measures Anxiety symptoms (GAD-7), stigma, and quality of life. Results Clinically significant anxiety (GAD-7 ≥5) was present in 33% of parents of children with urogenital conditions, similar to the rate in parents of NICU infants (34%) and significantly higher than in parents of healthy newborns (21%, p=0.03). Forty-one percent reported self-blame for their child's condition; 16% reported blaming their partners. Quality of life decreased with increasing stigma (p=0.001), genital atypicality (p=0.03), and anxiety scores (p=0.04). Backward elimination and LASSO regression with multiple imputation identified four key factors predicting increased anxiety: higher intolerance of uncertainty, increased parental health-related stress, lower educational level, and greater emotional stigma. Additional factors included greater genital atypicality, social isolation, and self-blame. Conclusions Parents of children with urogenital conditions experience anxiety levels comparable to parents of infants in the NICU, despite their children being medically stable. Uncertainty intolerance and emotional stigma provide targets for clinical screening and early intervention.