Introduction Parents of children with differences of sex development (DSD) and hypospadias experience significant psychological distress, but the specific factors contributing to anxiety in these parents remain poorly understood.

Objectives Identify psychosocial factors associated with anxiety symptoms among parents of children with urogenital conditions and compare anxiety levels to parents in other pediatric care settings.

Methods We conducted a cross-sectional survey study of 108 parents of children with urogenital conditions without established genetic diagnoses. Assessments included anxiety symptom scores (GAD-7), stigma measures, quality of life instruments, and demographic factors. Results were compared with 346 parents from BabySeq, a clinical trial of newborn genomic sequencing: 278 parents of healthy newborns, 68 parents of NICU infants. Backward elimination and LASSO regression modeling with multiple imputation identified key factors associated with anxiety symptoms.

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 of parents reported self-blame for their child’s condition, while 16% blamed their partners. DSD-related quality of life decreased with increasing stigma (p=0.001), genital atypicality (p=0.03), and anxiety scores (p=0.04). Four factors consistently predicted increased anxiety across multivariate models: 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.

Discussion Parents of children with urogenital conditions experience anxiety levels comparable to those with critically ill infants despite their children being medically stable. The identification of specific risk factors, particularly uncertainty intolerance and emotional stigma, provides targets for clinical screening and early intervention to support these families.

The authors have declared no competing interest.

This study was funded by the Raphael David Rising Star Award from the Pediatric Endocrine Society (PES) and R01 HD089521 from National Institutes of Health/Eunice K. Shriver National Institute of Child Health and Human Development.

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The Institutional Review Board of Boston Children's Hospital gave ethical approval for this work (IRB-P00012912).

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