A survey of parental perceptions and attitudes related to disclosure in hypospadias repair

Abstract

Boys with hypospadias often undergo reconstructive surgery to improve cosmetic appearance and functional outcomes. While the ethics of physician-patient disclosure of illness are clear, parent-child disclosure is more ambiguous. There is a paucity of research regarding the parental disclosure of past urological procedures, specifically hypospadias repair. Our objective was to determine the rate of parental disclosure in boys undergoing hypospadias repair, and to evaluate the parental perspectives regarding concerns and amount of support in relation. A web-based questionnaire was distributed to parents of 240 hypospadias patients at our pediatric urology outpatient clinic over 12 months. The questionnaire assessed intent to disclose, decisional regret, and cosmetic perception. Data was analyzed using descriptive statistics and chi-square analyses. Two hundred and twenty-three survey responses were collected. The majority of respondents were urban dwellers (72.2%), and the mothers of the child (80.9%). Distal hypospadias was the most common variant of condition (62.7%). When asked if they plan to disclose the repair to their child, 93% said "yes", and of those, the optimal mean age of disclosure was 7.49±4.30 years. Ninety percent reported that they were not offered guidance on how/when to disclose, and 43% thought they would benefit from support on this. There was a significant difference in nervousness to disclose if the condition was distal versus proximal (χ2=15.19, p=<0.01), with proximal being more nervous. A significant difference was also observed regarding disclosure support with proximal being more likely to want formal support (χ2=4.55, p=0.03). As hypothesized, the majority of parents intended to disclose their son's surgery to them, but no statistically significant difference was seen between those with a distal vs. proximal repair. Additionally, demographic characteristics which were hypothesized to influence this decision (e.g., parents' level of education and relationship to the child) did not discriminate parental intent to disclose. To our knowledge, this is the first study to evaluate perceptions and attitudes around disclosure in patients with hypospadias and their families. The majority of respondents were planning to disclose the operation to their child, and were not offered any guidance or support as to the optimal way to disclose. Half of those parents thought they could benefit from resources to help them with this process. Further research is required to understand the impact of disclosure and to create tools to help caregivers with this responsibility.