Although Patient-Reported Outcome Measurement Information System (PROMIS®) instruments are increasingly used in rheumatology research and care, guidance on interpretation of scores has not yet been delineated.
To identify thresholds and meaningful change for PROMIS pain interference and fatigue scores from the perspective of rheumatoid arthritis (RA) patients and clinicians, data from 11 adults (91% women) with RA and 8 healthcare providers (63% women) were analyzed. The average age of patients was 55 (±12) years and the average age of providers was 49 (±12) years.
Separate bookmarking sessions were held for RA patients and clinicians, in which vignettes were evaluated for symptom thresholds and the amount of improvement or worsening that constitutes meaningful change. The midpoints for pain interference symptom levels were 49.0 for none to mild, 59.0 for mild to moderate, and 67.0 for moderate to severe.
The midpoints for fatigue symptom levels were 44.0 for none to mild, 54.0 for mild to moderate, and 64.0 for moderate to severe. A 10-point change was determined to represent meaningful improvement for both pain interference and fatigue.
While there was general agreement between the 2 groups on mean thresholds for pain interference, patients selected mean thresholds for fatigue at least 5 points higher than providers. Generally, clinicians established a 5-point change as meaningful worsening for pain interference and fatigue, whereas patients considered a 10- to 15-point change as representative of meaningful worsening.
The results of this study established guidance on evaluating PROMIS scores in adults with RA as they relate to the severity of fatigue and pain interference symptoms and as they relate to meaningful change in symptom severity. This study also highlights the importance of context provided by patient backgrounds and interaction with their healthcare provider.
Limitations to this study include the use of vignettes, which provide limited information devoid of in-person interactions, which the healthcare providers noted were important in evaluation. Additionally, bookmarking is a resource-intensive exercise, requiring much time and engagement of participants.
Though the participants were purposefully chosen to provide diversity, this diversity may lead to inconsistent results.
Future research establishing guidance in interpreting PROMIS scores for other chronic conditions is warranted.
Disclosure: Several study authors declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.
Bingham CO, Butanis AL, Orbai AM, et al. Patients and clinicians define symptom levels and meaningful change for PROMIS pain interference and fatigue in RA using bookmarking. Published online January 20, 2021. Rheumatology (Oxford). doi:10.1093/rheumatology/keab014