Crowdsourcing utility estimation for spina bifida in the general population.
Ruiyang Jiang, Brian M Inouye, Hsin-Hsiao S Wang and 2 others
PMID 29125514WHAT IT FOUND
An online survey of 503 adults rated the quality of life for a child with spina bifida at 0.85, matching traditional interview estimates.
This suggests crowdsourcing is a viable, faster method for gathering patient preference data.
Key findings
01The estimated utility value for a generic 6-year-old child with spina bifida was 0.85, consistent with prior traditional estimates.
02Respondents' personal experience with spina bifida did not significantly alter their utility estimates.
STILL TO COME
How it was doneWhat they found
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What it does not show
The sample was recruited from an online marketplace and was not fully representative of the US population, with fewer married respondents and a higher percentage of Caucasian participants than national data. The study assessed a generic 'spina bifida' health state without distinguishing between specific forms like myelomeningocele or spina bifida occulta, which have different severities. Utility was estimated from a hypothetical parent/child dyad perspective, which may not reflect the actual preferences of patients or families living with the condition. Participants relied on a brief video and text description, which may not have conveyed the full complexity of living with spina bifida, particularly specific urological complications.
Declared interests
The authors declared no financial or personal relationships that could bias the work.
The easy way to misread this
Do not interpret the 0.85 utility score as a direct measure of patient or family quality of life. It reflects the preferences of the general public, who were asked to trade their own time, and may not align with how individuals actually living with spina bifida value their health states.