Quality of Life Improves with Improved Continence in People With Spina Bifida

To assess correlations between changes in urinary or bowel incontinence and health-related quality of life (HRQOL) in people with spina bifida.

Children (aged 8-17.9 years) and adults (aged 18-55) with spina bifida self-reported urinary and bowel incontinence (clinic questionnaires) and HRQOL (validated QUALAS questionnaire) 3 to 24 months apart (2018-2024). Mixed effects linear regression was used to analyze changes in HRQOL correcting for individual characteristics and regression to the mean.

One hundred thirty-five individuals (52% female, 81% shunted) participated at 23.8 years (median) during 259 follow-up intervals. Initially, 74% reported urinary incontinence, 68% bowel incontinence (mean baseline HRQOL: 74.6). At mean 11.8 months, HRQOL improved after resolution of urinary or bowel incontinence (mean: +10.5, P = .02), worsened after new urinary or bowel incontinence developed (-12.1, P < .0001), and did not change significantly when incontinence persisted (+0.2, P = .90). When baseline HRQOL was 0 to 79, 82% of individuals reported ≥10-point HRQOL improvements after incontinence resolution vs 41% when it persisted (absolute difference: 42%, P < .001). At higher baseline HRQOL, HRQOL improvements were lower (P < .001). On multivariate regression, resolved urinary and bowel incontinence were each associated with improved HRQOL (+9.3 and +10.7, P ≤ 0.006), and new urinary and bowel incontinence were each associated with worsened HRQOL (-11.3 and -10.7, P ≤ 0.02). Sex, shunt, ambulatory status, age, catheterizing independently, follow-up length, and treatments were not associated with additional HRQOL changes. Regression to the mean was noted (P < .02).

Continence changes correspond to HRQOL changes in people with spina bifida. This is more frequent with lower baseline HRQOL, which includes bothersome incontinence.