Refining and supplementing candidate measures of psychological well-being for the NIH PROMIS®: qualitative results from a mixed cancer sample

Purpose: The Patient-Reported Outcomes Measurement Information System (PROMIS) is a National Institutes of Health initiative designed to improve patient-reported outcomes using state-of-the-art psychometric methods. The aim of this study is to describe qualitative efforts to identify and refine items from psychological well-being subdomains for future testing, psychometric evaluation, and inclusion within PROMIS. Method: Seventy-two items from eight existing measures of positive affect, life satisfaction, meaning & purpose, and general self-efficacy were reviewed, and 48 new items were identified or written where content was lacking. Cognitive interviews were conducted in patients with cancer (n = 20; 5 interviews per item) to evaluate comprehensibility, clarity, and response options of candidate items. Results: A Lexile analysis confirmed that all items were written at the sixth grade reading level or below. A majority of patients demonstrated good understanding and logic for all items; however, nine items were identified as “moderately difficult” or “difficult” to answer. Patients reported a strong preference for confidence versus frequency response options for general self-efficacy items. Conclusions: Altogether, 108 items were sufficiently comprehensible and clear (34 positive affect, 10 life satisfaction, 44 meaning & purpose, 20 general self-efficacy). Future research will examine the psychometric properties of the proposed item banks for further refinement and validation as PROMIS measures.