Maryellen Kelly, assistant professor, is the senior author of "Utility Estimation for Neurogenic Bowel Dysfunction in the General Population," which was recently accepted for publication in the Journal of Pediatric Urology. Co-authors include Leah Davis, Kirsten Simmons, a School of Medicine alum, and Jonathan Routh of Duke Health.

Abstract:

BACKGROUND: Neurogenic bowel dysfunction (NBD) affects over 80% of individuals with spina bifida causing bowel incontinence and/or constipation. NBD is also associated with decreased quality of life, depression, anxiety, and decreased employment / educational attainment. This study aims to elicit utility scores for NBD using an online community sample.

METHODS: A cross-sectional survey was completed via an online platform (Amazon Mechanical Turk (MTurk, www.mturk.com)). The survey presented hypothetical scenarios that asked respondents to imagine themselves as an individual living with NBD or as the caretaker of a child with NBD. The time trade-off (TTO) method was used to estimate a utility score. Outcomes for each scenario were calculated using median and IQR. Univariate comparisons of distributions of TTO for demographic data were made using Kruskal-Wallis tests.

RESULTS: 1,534 adult individuals completed the survey and met the fidelity criteria, resulting in an 87% response rate. Forty percent of responders were 31-45 years of age, 53% were female, 50% were married, 74% were non-Hispanic White, and 59% were parents. Self-reported health status was moderate to good in 95% of respondents. Sixty-two percent had a college degree or higher and 33% earned more than $75,000/year. Median utility score for NBD was 0.84 [0.70-0.92]. Utility scores were not significantly different when assessed by gender, respondent health status, or income. Utility score was reduced in respondents with children (0.82 [0.66, 0.91]) as compared to those without children (0.87 [0.74, 0.93]).

CONCLUSION: NBD is perceived by the community as having a substantial impact to health-related quality of life on children with spina bifida.