Background Questionnaires assessing the beliefs of patients with chronic rheumatic diseases mainly focus on medications.1 A validated questionnaire evaluating patients' fears and beliefs towards their disease and therapeutic strategy would improve specific counseling or educational programs.
Objectives To develop and validate a patient-reported questionnaire to assess the fears and beliefs of patients suffering from rheumatoid arthritis (RA) or spondyloarthritis (SpA).
Methods Step 1: qualitative research (individual patient interviews: 25 RA, 25 SpA).2 Step 2: all fears and beliefs appearing in more than 10% of interviews rephrased as questions by an expert group including a patient-partner. Each question scored 0–10 (10 = higher fears/beliefs). Step 3: preliminary questionnaire tested by cognitive debriefing (5 RA and 5 SpA patients), and reproducibility through a test-retest procedure among 28 patients (13 RA, 15 SpA). Step 4: psychometric validation through a cross-sectional study of 226 patients. Internal consistency assessed by Cronbach's alpha, principal components analysis and descending hierarchical classification. Step 5: scoring results: descriptive presentation of the number of patients with scores ≥7/10, for ≥50% of the questions for a given domain, based on the psychometric validation.3
Results Steps 1–3: development and adaptation of a self-reported 44-item questionnaire on a 0–10 scale of fears and beliefs. Step 4: in the study of 226 patients (161 RA, 65 SpA), the mean DAS28 was 2.5/10 (RA patients) and the mean BASDAI was 25.9/100 (SpA patients). Based on the psychometric validation the following domains were identified: fears of the disease progression or consequences (18 items), fears about treatment (5), beliefs related to: psychological influence (2), genetic influence (2), physical influence (4), diet influence (4), lifestyle (3) and diverse opinions (4). Step 5: the 3 domains with the highest number of patients with scores ≥7/10, for ≥50% of the questions for a given domain were: fears of the disease progression or consequences (55.3%), beliefs related to psychological influence (48.2%) and fears about treatment (46.9%).
Conclusions This analysis indicates the internal consistency of the questionnaire developed. The questionnaire and the scoring results by domain should help physicians to better understand their patients' perceptions of their disease better, thus improving the patient-physician dialogue and eventually leading to a better adherence to treatment.
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Acknowledgements The authors acknowledge Costello Medical Consulting for editorial assistance which was funded by UCB Pharma.
Disclosure of Interest L. Gossec: None declared, A. Saraux: None declared, 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, P. Chauvin Consultant for: UCB Pharma, F. Berenbaum: None declared