RESUMO
The objective was to evaluate the efficacy of the information policy given to all systemic lupus erythematosus (SLE) patients. One hundred consecutive SLE patients were asked to answer anonymously a questionnaire covering demographic issues including education, adherence with prescriptions and advice given and methods of sourcing information. Seventy-three females and ten males responded. The demographic data showed that 34 had a university education, 29 high school and 19 primary school education. An inability to work due to disease was increased compared with the matched population (P < 0.001). Forty-two reported that they had received advice about physical training and forty of them followed this advice. Only 28 out of 46 smokers reported that they had got any advice about smoking, and out of these only 13 followed the advice. The patients with university background were less likely to smoke (P < 0.05) and followed the advice more often (P < 0.05). Most patients followed given advice about exposure to sunlight. Thirty-five percent of those prescribed glucocorticoids reported that they varied from the prescribed dosages without consultation with their specialist. This behaviour was more common in the university group (P < 0.05), this grouping also had a higher median dosage. Seventy-three patients had read the booklet about SLE provided by the clinic. Accessing internet information was more common for those with university education (P < 0.01). This study shows that on the whole SLE patients follow given advice, but adherence varies. Aside from the issue of glucocorticoid dosage adherence, educational level seems to be the most important predictor for adherence to advice. Thus, we conclude that a more individualized approach to delivery of information is required and better follow up is needed.
