The goal of this cohort research was to get a better understanding of the positive and negative effects of glucocorticoids (GCs) in patients with systemic lupus erythematosus and myositis from the patients’ perspective in order to establish a patient-reported outcome measure. Patients who were included in the study were asked to choose one of five notional groups in which demographic information and a quality-of-life questionnaire were gathered. Patients were asked two open-ended questions on the advantages and risks of using GC. The study utilised the Nominal Group Technique, a highly structured consensus approach that generates, shares, and ranks replies. The results were summarized using descriptive statistics. Of the 206 patients addressed, 21 participated, 17 with systemic lupus erythematosus and 4 with myositis, all of whom were women with more than ten years of steroid usage. Disease control, the rapid start of the action, improved energy, and pain reduction were the domains with the largest GC benefits. The negative consequences that garnered the most votes were bone loss and weight increase; psychological problems and damaged internal organs each received 12 votes.
The major GC effects—both benefits and harms—found in individuals with systemic rheumatic illness are similar to the top domains related to GC usage reported in other inflammatory disorders. This study contributes to the creation of a comprehensive patient-reported outcome measure applicable to inflammatory disorders.
