Background Patients with chronic inflammatory disorders such as rheumatoid arthritis (RA) or spondyloarthritis (SpA) create personal sets of fears and beliefs related to their disease. These fears and beliefs may influence the patient-physician relationship and potentially treatment adherence. Little is known about these fears and beliefs in the era of biologics.1
Objectives To describe the most frequent fears and beliefs in RA and SpA patients.
Methods Cross-sectional assessment of unselected patients with a diagnosis of RA (ACR/EULAR criteria) or axial SpA (ASAS criteria) in France in 2014. The study was proposed to all rheumatologists in France and consecutive patients recruited through the first 51 rheumatologists agreeing to participate. A self-reported 44-item questionnaire (25 items on fears, 19 on beliefs) was built and preliminarily validated for this study. Each item was scored 0–10 (10 indicating higher fears/beliefs).2 The analysis was descriptive for the 5 fears and the 5 beliefs, most frequently scored as ≥7/10, in both axSpA and RA patients.
Results Overall, 226 patients (161 RA and 65 SpA; 64.4% female) were analyzed: mean disease duration 11.9 vs 13.8 years and mean patient's global assessment 31/100 vs 41/100 for RA vs SpA patients, respectively. Of 25 fear items, the 6 most frequently-reported fears were: “afraid of suffering again” (66.7% scored this as ≥7/10), “afraid of losing control and autonomy” (61.4%), “afraid of being a burden for relatives” (59.6%), “afraid of losing all joint mobility” (58.9%), “afraid of the spread of the disease to other joints” (58.6%) and “afraid of the consequences of my disease on my professional activity” (58.6%). Of 19 belief items, the 5 most frequently-reported beliefs were: “flares are triggered by fatigue” (41.7%), “physical activity reduces flares” (38.7%), “flares are triggered by changes in the weather” (37.3%), “flares are triggered by physical effort” (37.1%) and “the disease is linked to a genetic cause” (36.9%).
Conclusions This study highlights the main fears and beliefs from a patient perspective using a novel questionnaire specific for chronic inflammatory arthritis. Consistent work needs to be performed to better document the effect of these fears and beliefs on adherence, disease care and progression.
Gossec L. Rheumatology 2014;53(7):1274–1278.
Berenbaum F. Plos One 2014;9(12) [Epub]
Acknowledgements The authors acknowledge Costello Medical Consulting for editorial assistance which was funded by UCB Pharma.
Disclosure of Interest L. Gossec: None declared, P. Chauvin Consultant for: UCB Pharma, C. Hudry: None declared, F. Mathoret-Philibert: None declared, M. Poussière: None declared, T. de Chalus Employee of: UCB Pharma, F. Russo-Marie: None declared, J. M. Joubert Employee of: UCB Pharma, A. Saraux: None declared, F. Berenbaum: None declared