Parental Concerns of Boys with Hypospadias

INTRODUCTION: Reports indicate many parents are negatively impacted by their child’s birth defect, experiencing feelings of anxiety, shame, and blame. These reactions have been documented for several conditions, but not hypospadias. We surveyed parents of boys with hypospadias to determine their concerns. MATERIALS: The validated Impact of a Child with Congenital Anomalies on Parents (ICCAP) questionnaire was administered to parents recruited through social media. RESULTS: There were 260 respondents (80% female, average age 35 years): 86% said they had never heard of hypospadias before their son’s diagnosis; 57% of mothers and 38% of fathers wondered if they were to blame for the hypospadias. This increased to 78% among women given progesterone during pregnancy. Sixty-four percent reported they worry “a great deal” about their son’s health, despite successful repair, which increased to 88% when surgery was not successful. Twenty percent responded that the surgeon did not spend enough time with them. CONCLUSION: Most parents of newborns with hypospadias have never previously heard of the condition. Many wondered if they are to blame for the birth defect, and most reported that they worry “a great deal” about their son’s future health, whether or not repair was successful. One in five said surgeons did not spend enough time to discuss these concerns, and one in four said their explanations were unclear. Awareness of these concerns is important for urologists since they are the primary caregivers for patients with hypospadias.