Survey development

Researchers engaged patients to understand current issues in the IPF community, including benefits and risks of treatments.28 Two phases of pilot testing occurred at one PaTH site (site D). In the first phase, cognitive interviews (n=15) were used to refine the survey attributes and levels, concepts and language, as well as to evaluate which of two different preference elicitation methods (best-worst scaling or discrete choice experiment) patients preferred. The concepts, including attributes and levels, were identical across methods. The pilot survey (n=14) was administered via paper and participants completed the survey while verbalizing their responses, thoughts, and concerns about content and formatting. Researchers also asked questions as appropriate. In the second phase, participants were mailed a paper survey, completed it and returned it via mail. Unlike the previous phase, participants completed the second phase survey without assistance. The results of the pilot study informed the discrete choice experiment in this study.29