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Background  Health state descriptions used to describe hypothetical scenarios in community-perspective utility surveys commonly omit detail on the time of onset of a condition, despite our knowledge that among patients who have a condition, experience affects the value assigned to that condition. The debate regarding whose values to use in cost utility analysis is based in part on this observed difference between values depending on the perspective from which they are measured. This research explores the effect on community preferences for hypothetical health states of including the time of onset of a health condition in the health state description, to investigate whether this information induces community respondents to provide values closer to those of patients with experience with a condition. The goal of the research is to bridge the gap between patient and community preferences.    Methods  A survey of community-perspective preferences for hypothetical health states was conducted among a convenience sample of healthy adults recruited from a hospital consortium's research volunteer pool. Standard gambles for three hypothetical health states of varying severity were compared across three frames describing time of onset: six months prior onset, current onset, and no onset specified in the description. Results were compared within health state across times of onset, controlling for respondent characteristics known to affect utility scores. Sub-analyses were conducted to confirm results on values meeting inclusion criteria indicating a minimum level of understanding and compliance with the valuation task.    Results  Standard gamble scores from 368 completed surveys were not significantly different across times of onset described in the health state descriptions regardless of health condition severity and controlling for respondent characteristics. Similar results were found in the subset of 292 responses that excluded illogical and invariant responses.    Conclusions  The inclusion of information on the time of onset of a health condition in community-perspective utility survey health state descriptions may not be salient to or may not induce expression of preferences related to disease onset among respondents. Further research is required to understand community preferences regarding condition onset, and how such information might be integrated into health state descriptions to optimize the validity of utility data. Improved understanding of how the design and presentation of health state descriptions affect responses will be useful to eliciting valid preferences for incorporation into decision making.

The effect of time of onset on community preferences for health states: an exploratory study