Development and Early Validation of A Survey Instrument for Measuring Patient Engagement in Pain Management

Efforts to improve patient engagement in pain management are often hindered by inconsistent definitions and measurements. To address this gap, we developed and pilot-tested the 15-item Patient Engagement in Pain Management survey. A systematic review of 77 survey instruments identified 6 key constructs of patient engagement, and semi-structured interviews with 36 patients and 3 providers from the Johns Hopkins Personalized Pain Program informed its development. The initial 33-item survey was refined to 15 items, and usability and test-retest reliability were evaluated with 60 Personalized Pain Program patients. The median completion time was 3.5 minutes, with minimal missing data (<0.5%). Most respondents (96-100%) found the questions relevant, with higher average scores for patient-provider communication (3.6-4.5 on a 5-point scale) and lower scores for adherence challenges. Although the Patient Engagement in Pain Management survey demonstrated good usability and applicability, further studies are needed to enhance its test-retest reliability and psychometric validation.