Assessing activity limitations experienced by persons with rheumatoid arthritis to inform appropriate selection of patient-reported outcomes measures: a qualitative study.

objectivesTo identify daily activity limitations, including but not limited to impairments in physical function, experienced by persons with rheumatoid arthritis (RA) and identify Patient-Reported Outcomes Measurement Information System (PROMIS) short form (SF) scales that can measure these limitations. METHODOLOGY: A cross-sectional, web-based survey was conducted among a diverse group of adults with RA across the spectrum of disease activity. PROMIS Upper Extremity (UE) SF7a, Physical Function (PF) SF8b, and a Task Difficulty Scale were used to assess daily activity limitations experienced by persons with RA in the United States. An open-ended question asking what other daily activity limitations respondents experienced was also included. The daily activity limitation in the text response and the three scale items were deductively coded using the International Classification of Functioning, Disability, and Health (ICF) based on an established linking rule. Potential PROMIS SF scales were identified and linked to ICF to measure some activity limitations reported by persons with RA. PROMIS PF SF10a was linked to ICF and compared with UE SF7a and PF SF8b.

resultsEighty-three out of 99 RA patient respondents answered the open-ended question, the majority (> 70%) of whom had severe or moderate physical function limitations. All 9 second-level sub-categories of the Activities and Participation (A&P) in ICF were linked to the text response to the open-ended question. UE SF7a and PF SF8b were linked to four of these second-level sub-categories (e.g., Mobility), while additional four second-level sub-categories (e.g., General tasks and demands, Interpersonal interactions and relationships) linked to PROMIS Fatigue SF7a and Ability to Participate in Social Roles and Activities (APS) SF4a. Moreover, PF SF10a was linked to four of these second-level sub-categories too, but with fewer items than UE SF7a plus the PF SF8b. Some activity limitations, such as driving and using telecommunication devices, were not linked to any items of the five PROMIS SF scales.

conclusionsPersons with RA reported a variety of activity limitations across multiple domains, including physical function, telecommunication, social interactions, and other aspects of daily living, which could be a focus for goal-setting communication in the clinical setting. PROMIS PF SF10a may be a more effective and efficient scale to measure 4 sub-categories of daily activity limitations. To more comprehensively assess the spectrum of the impact of RA, it appears advisable to also use PROMIS Fatigue SF7a and APS SF4a to examine General tasks and demands, and Interpersonal interactions and relationships limitations.