作者: Jonathan C. Routh , Maryellen S. Kelly , Leah G. Davis , Kirsten L. Simmons
DOI: 10.1016/J.JPUROL.2021.01.024
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摘要: Summary Background Neurogenic bowel dysfunction (NBD) affects over 80% of individuals with spina bifida causing incontinence and/or constipation. NBD is also associated decreased quality life, depression, anxiety, and employment/educational attainment. Because a life-altering condition without cure, understanding the utility different health states related to would aid clinicians as they try counsel families regarding management options better understand life disease management. Objective To elicit scores for using an online community sample. Study design A cross-sectional anonymous survey was completed by 1534 voluntary participants via platform (Amazon Mechanical Turk (MTurk, http://www.mturk.com/ )), representing 87% response rate. The presented hypothetical scenarios that asked respondents imagine themselves individual living or caretaker child NBD. time trade-off (TTO) method used estimate score, outcomes each scenario were calculated median IQR. Univariate comparisons distributions TTO demographic data made Kruskal–Wallis tests. Results score 0.84 [0.70–0.92]. Participants reported give up 5 years their own prevent in child. Utility values significantly when stratified age, gender, race, parental status, marital income. Stratification current status did not yield values. Discussion findings are comparable other TTO-determined moderately severe states, including persistent asthma (0.83), moderate seizure disorder (0.84) mild mental retardation (0.84). significant variations based on parent partner/marital income variables existed our study, which similar fields. limitations include lack unanimous agreement about TTO's validity measuring values, MTurk participant reports can be generalized greater population. Conclusion perceived having substantial impact lives children bifida, 16% reduction from perfect health. In general, state utilities have been increasingly healthcare systems how burdensome population perceives evaluate whether interventions improve years. Download : high-res image (405KB) full-size Figure 1 . Average neurogenic factors respondant.