What outcomes from pharmacologic treatments are important to people with rheumatoid arthritis? Creating the basis of a patient core set

Abstract

Objective Function, patient global assessment, and pain are routinely measured in rheumatoid arthritis (RA) clinical trials. However, other patient‐reported outcomes identified as important to patients in qualitative studies, such as fatigue and quality of life, are commonly not included, and modern treatment regimens may have changed patients' expectations of treatment outcomes. Our objective was to elicit patient priority treatment outcomes for pharmacologic interventions since the common use of anti–tumor necrosis factor (anti‐TNF) therapy, which will form the basis of a core set of patient priorities to complement existing professional core sets. Methods In‐depth interviews were conducted with 23 RA patients, purposively sampled for age, sex, medication (anti‐TNF or other disease‐modifying antirheumatic drugs), disease severity, and work status. Grounded theory guided iterative data collection and analysis. Coding of the data was peer reviewed. A patient research partner collaborated in the research design and analysis. Results Sixty‐three different outcomes important to patients were generated from the interviews. Four major categories of patient outcomes from pharmacologic treatments were developed: “RA under control,” “Doing things,” “Emotional health,” and “Coping with illness.” The core category (or overall theme) was “Minimizing the personal impact of RA.” Conclusion Although the routine outcomes of pain, function, and overall well‐being were raised by the patients, they also generated a further 60 important outcomes that they look for from treatment. This difference in perspective may potentially influence treatment decisions. The next step is therefore to use these data to develop a patient core set.