Abstract
OBJECTIVES: The objective of this study was to elicit feedback on consensus methodology used for core outcome set (COS) development. STUDY DESIGN AND SETTING: An online survey of international Delphi panelists participating in a recent COS for clinical research studies evaluating acute respiratory failure (ARF) survivors was conducted. Panelists represented 14 countries (56% outside the United States). RESULTS: Seventy (92%) panelists completed the survey, including 32 researchers, 19 professional association representatives, 4 research funding representatives, and 15 ARF survivors/caregiver members. Among respondents, 91% reported that the time required to participate was appropriate and 96% were not bothered by reminders for timely response. Attributes of measurement instruments and voting results from previous rounds were evaluated differently across stakeholder groups. When measurement properties were explained in the stem of the survey question, 59 (84%) panelists (including 73% of survivors/families) correctly interpreted information about an instrument's reliability. Without a reminder in the stem, only 20 (29%) panelists (including 38% of researchers) correctly identified properties of a COS. CONCLUSION: This international Delphi panel, including >20% patients/caregivers, favorably reported on feasibility of the methodology. Providing all panelists pertinent information/reminders about the project's objective at each voting round is important to informed decision making across all stakeholder groups.