ESPE Abstracts

Background: Hypospadias surgery is usually performed during infancy at which time parents act as proxy decision makers. Parental decisional regret, a common phenomenon after hypospadias surgery, may be affected by the process of informed consent where decision making between parents and healthcare provider is shared based on available evidence and individual concerns.

Objective: To identify short- and long-term parental concerns and related factors in a cohort of infants with hypospadias prior to surgery.

Materials and Methods: Infants attending our tertiary hypospadias clinic for the first time (n=139) were prospectively recruited to participate in this study. Over 21 months, 113 families (81.3%) accepted to participate. After examination parents were informed about hypospadias, the possibility of surgical management, its pros and cons, and the percentages of potential postoperative complications. Subsequently, parents (mothers n=113, fathers n=110) were asked to express their level of concern regarding the hypospadias diagnosis in childhood and in adulthood on a 5-point Likert scale. Parents were further asked to state their primary concern in a free text space.

Results: The Likert scores reflected a significantly higher level of concern for adulthood (mean 3.1, standard deviation (SD) 1.2) than childhood (mean 2.7, SD 1.1) (p <0.001). Mothers were significantly more concerned than fathers about child- (mean 2.8, SD 1.1 and mean 2.6, SD 1.2 respectively, p <0.001) and adulthood (mean 3.2, SD 1.1; mean 3.0, SD 1.2, p <0.001). Levels of concern rose significantly with lower maternal educational levels (c=-0.186, P=0.048). Concern scores were not associated with hypospadias severity, parental age or perinatal events (assisted reproduction (n=14), previous spontaneous abortions (n=32), extranumerary ultrasound scans (n=74), amniotic fluid sampling (n=6), placental biopsy (n=13), pregnancy related health problems (n=39), or prematurity (n=18)). Parents most often stated concern with regards to sexual life (n= 50), bullying (n= 50), self-esteem (n=48), and functionality (n=45).

Discussion: Parental concern about long-term outcomes occurs early in the course of their son’s hypospadias diagnosis. Hypospadias severity did not correlate to concern scores which may reflect that parents have difficulties understanding the information given possibly due to information overload as expressed by parents in other studies.

Conclusion: Future topics to include during the decision-making process regarding hypospadias surgery should include consideration of current knowledge on long-term outcomes. Processing information on this topic appears to be difficult and future decision-making tools may assist the process.