Children's Hospital Colorado

Caregiver Decisional Regret After Neurogenic Bladder Surgery

1/30/2025 2 min. read

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Key takeaways

  • Our pediatric urology experts examined decisional regret among caregivers of children with neurogenic bladder who underwent reconstructive surgery to enhance surgical counseling and shared decision-making.

  • Most survey respondents reported no decisional regret, but a subset reported significant regret.

  • Higher decisional regret was associated with Mitrofanoff leakage and patients who were male.

  • Future research is needed to address several study limitations and to gain insight from patients.


Research study background

A neurogenic bladder can cause a variety of complications in children, including incontinence, recurring urinary tract infections and long-term kidney damage. Treatments may include using a catheter to drain urine from the bladder, taking medications to prevent infection or relax the bladder or undergoing reconstructive bladder surgery. There is no cure for the neurogenic bladder, but surgical management may improve quality of life.

To avoid complications after surgery, many patients will require long-term maintenance, including intermittent catheterization and bladder irrigation. Deciding whether or not to pursue surgical treatment is a challenging process shared by physicians, caregivers and patients that is further hindered by lack of data.

“When performing complex reconstructive surgery, having long-term outcomes and the reason for any decisional regret the patient or family has is vital to the ongoing improvement in counseling and management.”

- DUNCAN WILCOX, MD

In this small cohort study, researchers from the Department of Pediatric Urology at Children’s Hospital Colorado examined whether caregivers regretted choosing surgery for their child. By measuring decisional regret, they aimed to understand the circumstances under which surgical treatment for neurogenic bladder felt like the right choice, based on caregivers' experiences caring for their child post-surgery.

Electronic surveys were sent to 210 English-speaking primary caregivers of patients who underwent reconstructive bladder surgery between 2009 and 2018. Forty-five caregivers responded. They rated decisional regret on a scale of 0-100 (0 indicated no regret; regret increased the higher the score) and answered questions about the challenges of managing a neurogenic bladder.

Among respondents, 25 cared for female patients and 20 cared for male patients. In addition, 60% of respondents cared for a patient with spina bifida. The median decisional regret score was 5. The majority of caregivers reported no decisional regret; however, nearly a quarter scored decisional regret at 30 or higher. Caregivers of children who reported urine leakage through the Mitrofanoff channel between catheterizations had higher decisional regret scores compared to caregivers of children who did not experience leakage. Caregivers of male patients reported the highest decisional regret scores. The research team surmised this could be due to the greater potential benefit of surgical reconstruction for females, especially those in wheelchairs, than males.

The study found that several factors did not significantly impact scores, including underlying diagnosis, race/ethnicity, insurance status, pain or discomfort, catheterization difficulty, urethral urine leakage or surgical procedure. The study found no consistent predictors of decisional regret.

Relevance to future research

While these observations are preliminary and not definitive, it opens the door for further investigation into this area of growing interest and could ultimately improve counseling for these families. Study limitations included a small sample size, low response rates and an English-only cohort. It also could not capture how pediatric patients feel about bladder reconstruction because the scale is not validated for children. Future studies should also incorporate Spanish-speaking families, assess patient regret in adult transitional care and examine the high regret reported by caregivers of male children.