Crowdsourcing utility estimation for spina bifida in the general population.

Abstract

Cost-utility analyses (CUA) are useful when the treatment conditions depend on patient preferences that are in turn dependent on health state utility value. Spina bifida (SB) is an example of such a preference-sensitive condition. Historically, the SB utility value for CUA has been gathered via a traditional face-to-face interview. However, due to funding and time constrains, utility estimation via online crowdsourcing has recently gained popularity. Our aim was to estimate the utility value for a generic SB health state using a validated online tool. A cross-sectional survey of American adults was conducted using the time-trade-off (TTO) method. Participants were recruited from an online crowdsourcing interface, Amazon's Mechanical Turk (mTurk). Demographic information and prior knowledge of SB were assessed. Respondents were provided a written passage and an online video explaining SB and its potential associated comorbidities. Participants were queried on hypothetical ascending time-trades from a child-parent dyad perspective to determine the utility of a SB health state in an affected 6-year-old child. Respondents were also asked to indicate the percentage of time traded from their life in relation to their child's. Utility estimates were then calculated and compared using bivariate and multivariate analyses. We obtained 503 responses (85% response rate). Mean respondent age was 34 (± 11); 247 (49%) were female; 386 (77%) were white; 189 (38%) were married, and 234 (46%) had children. Mean proportion of longevity traded by participants in the dyadic interaction was 66% (± 27) from the parent's life. Only 51 respondents (9%) reported having "ample" prior knowledge of SB; 8 respondents (0.02%) had SB themselves. Few others had previous experience with SB or myelomeningocele either in a child (4, 1%), or friend/relative (28, 5%). Compared with a perfect health state of 1.0, we found mean utilities of 0.85 (±0.20) for SB. Utility estimation for SB is feasible through crowdsourcing, and the resultant values are similar to previous estimates using traditional techniques. Subjects view the SB health state to be inferior to perfect health.