Quality of life improves with improved continence in people with spina bifida.

Abstract

To assess correlations between changes in urinary or bowel incontinence and health-related quality of life (HRQOL) in people with spina bifida. Children (8-17.9 years old) and adults (18-55) with spina bifida self-reported urinary and bowel incontinence (clinic questionnaires) and HRQOL (validated QUALAS questionnaire) 3-24 months apart (2018-2024). Mixed effects linear regression was used to analyze changes in HRQOL correcting for individual characteristics and regression to the mean. 135 individuals (52% female, 81% shunted) participated at 23.8 years old (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=0.02), worsened after new urinary or bowel incontinence developed (-12.1, p<0.0001) and did not change significantly when incontinence persisted (+0.2, p=0.90). When baseline HRQOL was 0-79, 82% of individuals reported >=10-point HRQOL improvements after incontinence resolution, versus 41% when it persisted (absolute difference: 42%, p<0.001). At higher baseline HRQOL, HRQOL improvements were lower (p<0.001).On multivariate regression, resolved urinary and bowel incontinence were each associated with improved HRQOL (+9.3 and +10.7, p<=0.006), 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<0.02). Continence changes correspond to HRQOL changes in people with SB. This is more frequent with lower baseline HRQOL, which includes bothersome incontinence.