Evaluating Decisional Regret in Adults With Spina Bifida Regarding Childhood Surgeries for Neurogenic Bladder and...

We assessed decisional regret (DR) among people with spina bifida (SB) regarding decisions caregivers made to manage their neurogenic bladder and bowel as children.

Consecutive adults with SB were surveyed at clinic appointments. For history of childhood bladder reconstruction, we analyzed whether demographics, procedural type, complications, revisions, and functional outcomes affected DR. For history of childhood Malone antegrade continence enema (MACE) channel creation, we additionally analyzed whether bowel management habits or symptoms affected DR.

Ninety-six adults (median age 26.3 years) had childhood surgery for neurogenic bladder and 71 had MACE for neurogenic bowel. Median DR scores were 0 (mean 11.9) for bladder reconstruction and 0 (mean 12.0) for MACE. For bladder surgery, 60% reported no regret. Of those with any regret, 89% reported low to moderate regret and 11% reported strong or very strong regret. DR was associated with having a bladder neck procedure (odds ratio [OR] 3.45, P = .007) or bothersome urinary incontinence (OR 5.59, P = .001). For MACE, 58% reported no regret. Of those with any regret, 97% reported low to moderate regret and 3% reported very strong regret. On univariate analysis, DR was associated with time on toilet > 1 hour (OR 3.7, P = .023), bother waiting for stool evacuation (OR 3.2, P = .029), and difficulty catheterizing (OR 3.3, P = .024); none remained significant on multivariate analysis.

People with SB reported low levels of DR after childhood surgery for neurogenic bladder and bowel, suggesting general satisfaction with decisions made on their behalf by caregivers. More research is needed into factors that were associated with regret, including incontinence and bladder neck procedures.