Kirsten L Simmons1, Leah G Davis2, Jonathan C Routh3, Maryellen S Kelly4. 1. Department of Surgery, Duke University School of Medicine, Durham, NC, USA. Electronic address: kirsten.simmons@duke.edu. 2. Department of Surgery, Duke University School of Medicine, Durham, NC, USA; Duke University Medical Center, Durham, NC, USA. Electronic address: lgerberdavis@gmail.com. 3. Department of Surgery, Duke University School of Medicine, Durham, NC, USA. Electronic address: jonathan.routh@duke.edu. 4. Department of Surgery, Duke University School of Medicine, Durham, NC, USA. Electronic address: Maryellen.Kelly@duke.edu.
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. Because NBD is a life-altering condition without a cure, understanding the utility of different health states related to NBD would aid clinicians as they try to counsel families regarding management options and to better understand the quality of life associated with disease management. OBJECTIVE: To elicit utility scores for NBD using an online community sample. STUDY DESIGN: A cross-sectional anonymous survey was completed by 1534 voluntary participants via an online platform (Amazon Mechanical Turk (MTurk, http://www.mturk.com/)), representing an 87% response rate. 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, and 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: The median utility score for NBD was 0.84 [0.70-0.92]. Participants reported that they would give up a median of 5 years of their own life, to prevent NBD in themselves of their child. Utility values for child scenarios were significantly different when stratified by age, gender, race, parental status, marital status, and income. Stratification by current health status did not yield significantly different utility values. DISCUSSION: Study findings are comparable with other TTO-determined utility values of moderately severe disease states, including severe persistent asthma (0.83), moderate seizure disorder (0.84) and mild mental retardation (0.84). The significant variations in utility values based on age, gender, race, parent status, partner/marital status and income variables existed in our study, which is similar to findings in other health fields. Study limitations include lack of unanimous agreement about TTO's validity in measuring utility values, and MTurk participant reports can be generalized to greater population. CONCLUSION: NBD is perceived by the community as having a substantial impact on the lives of children with spina bifida, representing a 16% reduction from perfect health. In general, health state utilities have been increasingly used in healthcare systems to understand how burdensome a population perceives a disease is and to evaluate whether interventions improve quality of life years.
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. Because NBD is a life-altering condition without a cure, understanding the utility of different health states related to NBD would aid clinicians as they try to counsel families regarding management options and to better understand the quality of life associated with disease management. OBJECTIVE: To elicit utility scores for NBD using an online community sample. STUDY DESIGN: A cross-sectional anonymous survey was completed by 1534 voluntary participants via an online platform (Amazon Mechanical Turk (MTurk, http://www.mturk.com/)), representing an 87% response rate. 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, and 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: The median utility score for NBD was 0.84 [0.70-0.92]. Participants reported that they would give up a median of 5 years of their own life, to prevent NBD in themselves of their child. Utility values for child scenarios were significantly different when stratified by age, gender, race, parental status, marital status, and income. Stratification by current health status did not yield significantly different utility values. DISCUSSION: Study findings are comparable with other TTO-determined utility values of moderately severe disease states, including severe persistent asthma (0.83), moderate seizure disorder (0.84) and mild mental retardation (0.84). The significant variations in utility values based on age, gender, race, parent status, partner/marital status and income variables existed in our study, which is similar to findings in other health fields. Study limitations include lack of unanimous agreement about TTO's validity in measuring utility values, and MTurk participant reports can be generalized to greater population. CONCLUSION: NBD is perceived by the community as having a substantial impact on the lives of children with spina bifida, representing a 16% reduction from perfect health. In general, health state utilities have been increasingly used in healthcare systems to understand how burdensome a population perceives a disease is and to evaluate whether interventions improve quality of life years.
Authors: Rohit Tejwani; Hsin-Hsiao S Wang; Jessica C Lloyd; Paul J Kokorowski; Caleb P Nelson; Jonathan C Routh Journal: J Urol Date: 2016-10-13 Impact factor: 7.450
Authors: Konrad M Szymanski; Mark P Cain; Benjamin Whittam; Martin Kaefer; Richard C Rink; Rosalia Misseri Journal: J Urol Date: 2017-01-26 Impact factor: 7.450
Authors: Maryellen S Kelly; John S Wiener; Tiebin Liu; Priya Patel; Heidi Castillo; Jonathan Castillo; Brad E Dicianno; Joan Jasien; Paula Peterson; Jonathan C Routh; Kathleen Sawin; Eileen Sherburne; Kathryn Smith; Asma Taha; Gordon Worley Journal: J Pediatr Rehabil Med Date: 2020