Rheumatoid arthritis: profile of patients and burden of caregivers

Abstract Objective: to describe the profile of patients with Rheumatoid Arthritis (RA) and their caregivers receiving care at the Rheumatology Outpatient Clinic of a teaching hospital, and evaluate the burden of the caregivers. Method: a cross-sectional study was performed with 41 patients with RA and their caregivers using a questionnaire to identify sociodemographic variables; the Burden Interview Scale and the Stanford Health Assessment Questionnaire. Descriptive analyzes and comparison between clinical-demographic variables and the functional status of patients were performed and the correlation between sociodemographic variables and levels of burden of caregivers was tested. Results: there was a prevalence of female patients (87.8%); a mean age of 64.4 years (±12.9); a mean time for the diagnosis of RA of 13.5 years (±8.5), a prevalence of moderate disability (39.0%); lower disability in the Hygiene domain (1.6; ±0.5) and greater disability in the Other Activities of Daily Life (2.1; ±0.6), Reach (2.0; ±0.7) and Grip (2.0; ±0.7) domains. The caregivers were women (73.2%); aged between 17 and 81 years (mean: 46.8; ±15.1); with a high school education (41.4%). The degree of kinship was 56.2% offspring and 36.6% spouses. Eighteen (44.0%) caregivers suffered burden, nine (22.0%) of whom had mild burden and nine (22.0%) of whom suffered intense burden. There was a higher incidence of intense burden among spouses (12.2%) and mild burden among children (12.2%). Conclusion: the low occurrence of burden among caregivers may be related to the profile of the patients, who presented good levels of independence for self-care. The profile of caregivers and the prevalence of overburdened spouses and offspring shows the need and importance of the implementation of caregiver training by health service professionals to improve care for RA patients.