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: One hundred and eight 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 neonatal intensive care unit [NICU] infants).

Main outcome measures: Anxiety symptoms (Generalized Anxiety Disorder 7-item scale [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 = .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 = .001), genital atypicality (P = .03), and anxiety scores (P = .04). Backward elimination and Least Absolute Shrinkage and Selection Operator regression with multiple imputation identified 4 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.

Conclusion: 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.