Development and psychometric validation of a patient-reported outcome measure to assess fears in rheumatoid arthritis and axial spondyloarthritis: the Fear Assessment in Inflammatory Rheumatic diseases (FAIR) questionnaire

Abstract

ObjectivesTo develop and validate an outcome measure for assessing fears in patients with rheumatoid arthritis (RA) and axial spondyloarthritis (axSpA).MethodsFears were identified in a qualitative study, and reformulated as assertions with which participants could rate their agreement (on a 0–10 numeric rating scale). A cross-sectional validation study was performed including patients diagnosed with RA or axSpA. Redundant items (correlation >0.65) were excluded. Internal consistency (Cronbach’s α) and factorial structure (principal component analysis) were assessed. Patients were classified into fear levels (cluster analysis). Associations between patient variables and fear levels were evaluated using multiple logistic regression.Results672 patients were included in the validation study (432 RA, 240 axSpA); most had moderate disease activity and were prescribed biologics. The final questionnaire included 10 questions with high internal consistency (α: 0.89) and a single dimension. Mean scores (±SD) were 51.2 (±25.4) in RA and 60.5 (±22.9) in axSpA. Groups of patients with high (17.2%), moderate (41.1%) and low (41.7%) fear scores were identified. High fear scores were associated with high Arthritis Helplessness Index scores (OR 6.85, 95% CI (3.95 to 11.87)); high Hospital Anxiety and Depression Scale anxiety (OR 5.80, 95% CI (1.19 to 4.22)) and depression (OR 2.37, 95% CI (1.29 to 4.37)) scores; low education level (OR 3.48, 95% CI (1.37 to 8.83)); and high perceived disease activity (OR 2.36, 95% CI (1.10 to 5.04)).ConclusionsOverall, 17.2% of patients had high fear scores, although disease was often well controlled. High fear scores were associated with psychological distress. This questionnaire could be useful both in routine practice and clinical trials.

The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries

“…These axSpA-related hopes and fears may consequently influence several factors including the patient-physician relationship or treatment adherence [19]; it is critical for patients to share these with their physician. Equally important to the patient-physician dialog is the discussion of the patient’s personal treatment goals.…”

<p>From drug-delivery device to disease management tool: a study of preferences for enhanced features in next-generation self-injection devices</p>

“…Evidence from focus groups suggests patient views on what constitutes an “ideal device” can vary, with patients valuing alternative features differently 8. Differences in preferences may be driven by a number of factors, for example, the impact of disease on joint mobility, patient lifestyle, chronic disease longevity and management, and fears and beliefs around disease 9,10. Discrete-choice experiments (DCE) are routinely used to elicit individuals’ preferences and can be used when comparing health care technologies 11,12.…”

Development and application of a questionnaire to assess patient beliefs in rheumatoid arthritis and axial spondyloarthritis

“…The Questionnaire for Arthritis Dialogue (QuAD) includes 44 items in total, 21 of which cover beliefs on the cause of disease, disease flares and treatments. The remaining 23 items concern fears that are described in detail elsewhere [ 21 ].…”