Introduction: To assess decisional regret (DR) amongst patients with spina bifida (SB) regarding the decisions caregivers made to manage their neurogenic bladder (NB) as children
Methods: Consecutive adult patients with SB were surveyed at clinic appointments (6/18-1/20). Higher DR Scale scores indicated greater DR (range 0-100). We analyzed whether presence of a ventriculoperitoneal shunt (VPS), mobility, gender, age, history of a bladder augment, history of a catheterizable channel, history of a bladder neck procedure, history of a bladder stone, history of a catheterizable channel revision, urinary incontinence, bothersome urinary incontinence, or recurrent urinary tract infection (=3/year) had any impact on DR. Non-parametric statistical tests were used.
Results: Ninety-six patients with a median age of 26.3 (79.2% shunted, 56.3% female) had childhood surgery for NB. Median DR score was 0 (mean 11.9). Overall, 60.4% reported no regret and of those who reported regret, 89.5% reported only mild-moderate regret. In total, 4.2% of patients reported strong or very strong regret. Having any regret was associated with having a bladder neck procedure (OR 3.45, p=0.007) or bothersome urinary incontinence (OR 5.59, p=0.001). Regret was not associated with other factors.
Conclusions: Patients with SB and resultant NB reported low levels of DR after surgery to manage their NB in childhood. When present, DR is usually mild. DR is more likely in those with a bladder neck procedure or bothersome urinary incontinence.
.jpg)
.jpg)
