Abstract
INTRODUCTION: Patient attitudes toward systemic lupus erythematosus (SLE) play a critical role in disease management, yet their evolution through the treatment course remains understudied. This study aimed to map changes in patients' SLE-related attitudes from diagnosis to post-treatment and to identify sociodemographic, clinical, and management-related factors associated with these attitudinal changes. METHODS: We conducted a multicenter cross-sectional retrospective study involving 1,509 patients with confirmed SLE from 105 hospitals across China. Participants completed a structured questionnaire assessing attitudes toward SLE at diagnosis and post-treatment. Attitudes were categorized as positive or negative, and changes classified as better, worsen, or unchanged. Multivariable logistic regression analyses were applied to identify factors associated with initial attitudes, post-treatment attitudes, and attitudinal changes. RESULTS: At diagnosis, 959 (63.6%) patients held a negative attitude, while 550 (36.5%) reported a positive attitude. After treatment, 1,367 patients (90.6%) reported a positive attitude. At diagnosis, female sex and higher education level were associated with lower odds of a positive attitude, while familiarity with national SLE guidelines and doctor-oriented medication management were positively associated. After treatment, improved attitudes were significantly associated with older age, guideline familiarity, and collaborative management expectations. Conversely, younger onset age, side effects, and patient-led medication management were linked to persistent negative attitudes. Among patients with better attitudinal change, older age, higher education, guideline familiarity, and doctor-oriented and patient-involved management expectations were key predictors. Attitudes worsening was significantly associated with the incidence of extra side effects. DISCUSSION: Patient attitudes toward SLE are dynamic and shaped by clinical experiences, knowledge, and treatment interactions. Recommendations include enhancing physician-patient interactions, strengthening patient education, and proactive intervention and management of treatment, particularly during early stages, to foster more positive attitudes and support better long-term outcomes.