Changes in attitudes toward systemic lupus erythematosus and associated factors: a retrospective cross-sectional...

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.

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.

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.

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.