Peer-reviewed article
Parental anxiety in differences of sex development and hypospadias: a psychosocial characterization.
Schlegel SF, Kremen J, Dutcher A, Pereira S, Holm IA et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study examined anxiety and psychological distress in parents of children with differences of sex development and hypospadias, urogenital conditions that are medically stable but affect genital appearance. One-third of parents reported clinically significant anxiety levels comparable to parents of critically ill infants. Key factors associated with higher anxiety included difficulty tolerating uncertainty, emotional stigma, lower education, and self-blame. The research suggests that psychological support targeting these factors could help reduce parental distress.
Key points
- 33% of parents of children with urogenital conditions had clinically significant anxiety symptoms
- Parental anxiety levels were similar to those of parents with infants in neonatal intensive care (34%) and significantly higher than parents of healthy newborns (21%)
- 41% of parents reported self-blame for their child's condition, and 16% blamed their partners
- Four key factors predicted higher anxiety: intolerance of uncertainty, health-related stress, lower education level, and emotional stigma
- Quality of life decreased with increasing stigma, genital atypicality, and anxiety scores
Limitations
This was a cross-sectional study, so it cannot establish causation or clarify temporal relationships between anxiety and the identified factors. The study was conducted at a single academic medical center and may not generalise to other healthcare settings or populations.
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.