Society For Pediatric Urology

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Pediatric Health State Utilities: Whose Dyad is it Anyway?
M. Hassan Alkazemi, MS, Rohit Tejwani, MD, Leigh Nicholl, MS, Steven Wolf, MS, Gina-Maria Pomann, PhD, Jonathan C. Routh, MD, MPH.
Duke University, Durham, NC, USA.

BACKGROUND: Pediatric health state utility values, a quality of life measurement, can be estimated from preference assessment of a community. Online work-distribution platforms provide a means through which these utilities can be estimated using time-trade-off (TTO) surveys. Utility estimates are not only condition-specific, but also perspective-specific. Utility values for pediatric conditions may differ widely depending on whether respondents are queried from a parent perspective, the child’s perspective, or a parent-child dyad perspective. We aim to resolve the ambiguity associated with a dyad perspective using a validated online community survey.
METHODS: A cross-sectional survey was conducted on Amazon′s Mechanical Turk, a validated online platform where users receive small rewards for completing surveys. Respondents were required to be ≥18y and based in the USA. They were randomized to one of three common Difference of Sex Development (DSD) conditions. Demographics data, including parental status, religious affiliation and prior familiarity with DSD were collected. Attention checks were used to exclude respondents. A TTO approach was used to determine a utility value as well as query dyad responses. A final sample size of 1,628 (of an initial 2,278) was obtained.
RESULTS: Median respondent age was 34y, 59.4% were female and 59.1% were parents at the time of the survey. Most respondents were white (77.1%), 49.0% were Christian and 60.4% were unfamiliar with DSD. The median overall utility value for any DSD diagnosis was 0.70 (IQR 0.50-0.90). Respondents were asked to provide their age, after which a scale was generated of their combined total remaining life years for their hypothetical 6yo child with a DSD diagnosis and their remaining life years based on the 2013 Centers for Disease Control life tables. When asked what percentage of their total remaining shared life-years one would trade in the dyad situation in order to avoid a DSD diagnosis, the median response was 100% (IQR 63.0% - 100.0%) came from the respondent’s life vs. their hypothetical child. When looking at parent status, the median dyad for current parents is 100%, IQR 70%-100%; non-parents 90%, IQR 57%-100%. Median dyad was the same for those who had “none to minimal knowledge of the term “intersex” and those who had “moderate to ample” knowledge of the term.
CONCLUSIONS: Pediatric health utility values that are calculated from dyad scenarios may differ based on the perspective of the respondent. We show that in the dyad scenario using TTO methods, parents and hypothetical parents were likely to trade all of their remaining combined hypothetical lives from their share.
Funding Source: The Charles Josiah Trent Memorial Foundation Endowment Fund.

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