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Objective To compare perceptions of patients with rheumatoid arthritis (RA) to those of their families regarding pain and subjective experience of the disease. Methods It was a monocentric study, including 120 RA patients (according to the American College of Rheumatology criteria). The questionnaires were developed during meetings of RA patients, rheumatologists, and methodologists while referring to the literature. The patient questionnaire comprised 22 items organized in 4 sections: pain, perceived experience of the disease, activity restrictions, and help received. Concordance among patients, family, and friends replies was evaluated using the kappa coefficient. Results The mean age was 42 ± 12 years with female predominance 110 (91.7%). The family member was usually the spouse (46.3%). Joint pain was described by patients as spontaneous (98.3%), unpredictable (95.9%), and variable (95.1%). RA had negatively affected work-related activities (100%), recreational activities (98.4%), family life (87.6%), relationships with friends (77.7%), sexual activities (50.4%), plans for having children (47.1%), and intimate relationships (46.3%). Concordance between patients and family perceptions was mediocre for pain severity (kappa: 0.3) and main joint-pain characteristics, excellent for majority items of experience of the disease (kappa > 0.80). Family tended to underestimate pain severity and to overestimate negative effects of RA on patient's life. Conclusion We found a good agreement between patients' and family members' perceptions. It is essential that any family support be in accordance with patients' needs. Our qualitative analysis objectified, in addition to a major physical impact of the disease, a negative psychosocial effect.

Il s’agit de madame RN âgée de 37 ans, sans antécédents particuliers, qui présente depuis un an des douleurs de la face dorsale du pied droit évoluant dans un contexte de conservation de l’état général. A l’examen physique on note des nodules sous cutanés sensibles à la palpation en regard du medio- pied et du 1er rayon du pied droit. Le reste de l’examen somatique est sans particularités. Le bilan n’a pas objectivé d’inflammation biologique. La radiographie standard des pieds est normale alors que l’échographie ostéoarticulaire objective des images multiples hypoéchogènes, homogènes, arrondies, en continuité avec le pédicule tibial antérieur, prenant légèrement le Doppler (figure 1).