RESUMO
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.
