Caregiver decisional regret following reconstructive bladder surgery in children with neurogenic bladder

Background Surgical management for neurogenic bladder requires complex decision-making by physicians, patients, and caregivers. Assessing decisional regret (DR) as a patient-reported outcome among caregivers could inform future counseling and shared decision-making. Objective To assess DR among caregivers of children with neurogenic bladder following reconstructive bladder surgery. Study design A questionnaire including a validated DR survey was distributed to English-speaking caregivers of children with neurogenic bladder who had undergone reconstructive bladder surgery at Children's Hospital Colorado. DR scores range from zero to 100, with higher numbers indicating higher regret. Wilcoxon rank sum test and Spearman correlation were performed to assess differences in DR scores by patient demographic factors or disease factors. Results Forty-five of 210 English-speaking caregivers completed the DR survey. The median DR score was 5, with 40% of subjects reporting with a DR score of zero and 24% of subjects with a DR score of 30 or higher. Patient sex and Mitrofanoff leakage were found to be associated with DR, with caregivers of male patients reporting significantly higher DR. Surgical procedure did not have a statistically significant impact on DR scores. Discussion Sparse existing data exploring DR among patients with neurogenic bladder suggest DR following reconstructive bladder surgery is low, with few identifiable predictors of regret. While the majority of caregivers in our study report little or no DR, one quarter of caregivers report moderate to high DR. The limitations of this study include small cohort size, low response rate, exclusion of non-English speaking patients, and the potential for recall bias due to the survey design of the study. Conclusion Caregiver DR following bladder reconstruction in children with neurogenic bladder is generally low, however a subset of caregivers reports significant DR. This study suggests that caregivers of male children may have higher DR, a finding that merits further investigation.