Survey Identifies Key Domains of Patient-Perceived Remission in RA

Pain, fatigue, and independence comprised the most important domains of patient-perceived remission in rheumatoid arthritis (RA), according to a survey study led by Lilian H. D. van Tuyl, PhD, of Amsterdam Rheumatology & Immunology Center, The Netherlands. Results were published in Annals of the Rheumatic Diseases.¹

“The aim of the current descriptive study was to determine the importance of specific symptoms, aspects of disease impact, and normality in defining remission in RA from the patient perspective through a survey, to complete the information necessary for optimal clinical management,” wrote Dr van Tuyl and colleagues.

The patient perspective on the impact of RA has increasingly been recognized as an important factor in the definition of remission. Current RA guidelines recommend that treatment be targeted toward remission or low disease activity in consultation and agreement with the patient.

Remission was defined in 2011 by the American College of Rheumatology (ACR), the European League Against Rheumatism (EULAR), and the Outcome Measures in Rheumatology group (OMERACT). However, the only patient-reported outcomes (PROs) included in that definition were physical activity, pain, and global assessment of disease activity. Other potential important components of remission from the patient perspective were not available when the definition was formulated.

The foundation for the survey was a prior qualitative research study in which focus groups held in Austria, The Netherlands, and the United Kingdom were conducted in 47 patients with RA. That qualitative research identified 3 major themes of patient-perceived remission: an absence or reduction in pain, stiffness, and fatigue; a diminishment in the daily impact of the disease; and a return to normality. Ultimately, 26 domains of remission (such as pain, physical function, activities of daily living, and fine motor skills) within these major themes were identified. In the present study, 274 patients rated those 26 domains for importance in characterizing remission; for the domains rated as important, the patients selected whether the domain needed to be “less,” “almost gone,” or “gone” to reflect remission.

Analysis of survey results revealed that the 3 domains most frequently selected as important in reflecting remission were pain (67%), fatigue (33%), and independence (19%).  Pain (60%), mobility (52%), physical function (51%), independence (47%), and fatigue (41%) were the domains patients most frequently designated as essential in reflecting remission. Respondents stated that pain needed to be “less” (13%), “almost gone” (42%), or “gone” (45%) to reflect remission. Designations of the need to be “less,” “almost gone,” or “gone” (or “better,” “almost normal,” or “normal,” as appropriate to the domain) were distributed similarly for fatigue (23%, 40%, 37%), independence (16%, 31%, 53%), mobility (16%, 35%, 49%), and physical functioning (14%, 29%, 57%).

Summary and Clinical Applicability

“In summary, this survey study identified the 3 most important domains of patient-perceived remission, based on preceding qualitative research on the patient perspective on remission in RA,” the investigators wrote. “Follow-up research has been initiated to identify valid measurement instruments for these domains and quantify the contribution to the ACR/EULAR remission criteria.”

Limitations

The researchers noted 2 potential weaknesses of their study:

• Because the response rate was not uniformly measured at all sites, it is possible that the study cohort consisted of highly motivated patients and did not fully represent the population of patients with RA.
• The study did not collect clinical data; thus, results could not be correlated with standard disease activity measures.

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Reference

1. van Tuyl LHD, Sadlonova M, Hewlett S, et al. The patient perspective on absence of disease activity in rheumatoid arthritis: a survey to identify key domains of patient-perceived remission [published online November 30, 2016]. Ann Rheum Dis.  doi:10.1136/annrheumdis-2016-209835