Condon, David
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Browsing Condon, David by Author "Cella, David"
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Item Open Access Cross-sectional validation of the PROMIS-Preference scoring system(Public Library of Science, 2018-07-31) Hanmer, Janel; Dewitt, Barry; Yu, Lan; Tsevat, Joel; Roberts, Mark; Revicki, Dennis; Pilkonis, Paul A.; Hess, Rachel; Hays, Ron D.; Fischhoff, Baruch; Feeny, David; Condon, David; Cella, DavidObjectives The PROMIS-Preference (PROPr) score is a recently developed summary score for the Patient-Reported Outcomes Measurement Information System (PROMIS). PROPr is a preference-based scoring system for seven PROMIS domains created using multiplicative multi-attribute utility theory. It serves as a generic, societal, preference-based summary scoring system of health-related quality of life. This manuscript evaluates construct validity of PROPr in two large samples from the US general population. Methods We utilized 2 online panel surveys, the PROPr Estimation Survey and the Profiles-Health Utilities Index (HUI) Survey. Both included the PROPr measure, patient demographic information, self-reported chronic conditions, and other preference-based summary scores: the EuroQol-5D (EQ-5D-5L) and HUI in the PROPr Estimation Survey and the HUI in the Profiles-HUI Survey. The HUI was scored as both the Mark 2 and the Mark 3. Known-groups validity was evaluated using age- and gender-stratified mean scores and health condition impact estimates. Condition impact estimates were created using ordinary least squares regression in which a summary score was regressed on age, gender, and a single health condition. The coefficient for the health condition is the estimated effect on the preference score of having a condition vs. not having it. Convergent validity was evaluated using Pearson correlations between PROPr and other summary scores. Results The sample consisted of 983 respondents from the PROPr Estimation Survey and 3,000 from the Profiles-HUI survey. Age- and gender-stratified mean PROPr scores were lower than EQ-5D and HUI scores, with fewer subjects having scores corresponding to perfect health on the PROPr. In the PROPr Estimation survey, all 11 condition impact estimates were statistically significant using PROPr, 8 were statistically significant by the EQ-5D, 7 were statistically significant by HUI Mark 2, and 9 were statistically significant by HUI Mark 3. In the Profiles-HUI survey, all 21 condition impact estimates were statistically significant using summary scores from all three scoring systems. In these samples, the correlations between PROPr and the other summary measures ranged from 0.67 to 0.70. Conclusions These results provide evidence of construct validity for PROPr using samples from the US general population.Item Open Access Development of the Initial Surveys for the All of Us Research Program(Epidemiology, 2019-07) Cronin, Robert M.; Jerome, Rebecca N.; Mapes, Brandy; Andrade, Regina; Johnston, Rebecca; Ayala, Jennifer; Schlundt, David; Bonnet, Kemberlee; Kripalani, Sunil; Goggins, Kathryn; Wallston, Kenneth A.; Couper, Mick P.; Ellitt, Michael R.; Harris, Paul; Begale, Mark; Munoz, Fatima; Lopez-Class, Maria; Cella, David; Condon, David; AuYoung, Mona; Mazor, Kathleen M.; Mikita, Steve; Manganiello, Michael; Borselli, Nicholas; Fowler, Stephanie; Rutter, Joni L.; Denny, Joshua C.; Karlson, Elizabeth W.; Ahmedani, Brian K.; O'Donnell, ChrisBackground: The All of Us Research Program is building a national longitudinal cohort and collecting data from multiple information sources (e.g., biospecimens, electronic health records, and mobile/wearable technologies) to advance precision medicine. Participant-provided information, collected via surveys, will complement and augment these information sources. We report the process used to develop and refine the initial three surveys for this program. Methods: The All of Us survey development process included: (1) prioritization of domains for scientific needs, (2) examination of existing validated instruments, (3) content creation, (4) evaluation and refinement via cognitive interviews and online testing, (5) content review by key stakeholders, and (6) launch in the All of Us electronic participant portal. All content was translated into Spanish. Results: We conducted cognitive interviews in English and Spanish with 169 participants, and 573 individuals completed online testing. Feedback led to over 40 item content changes. Lessons learned included: (1) validated survey instruments performed well in diverse populations reflective of All of Us; (2) parallel evaluation of multiple languages can ensure optimal survey deployment; (3) recruitment challenges in diverse populations required multiple strategies; and (4) key stakeholders improved integration of surveys into larger Program context. Conclusions: This efficient, iterative process led to successful testing, refinement, and launch of three All of Us surveys. Reuse of All of Us surveys, available at http://researchallofus.org, may facilitate large consortia targeting diverse populations in English and Spanish to capture participant-provided information to supplement other data, such as genetic, physical measurements, or data from electronic health records.