Systemic lupus erythematosus in China: healthcare-seeking behaviours, disease flares, knowledge of and attitude toward the disease (Preprint)

BACKGROUND Systemic lupus erythematosus (SLE) is a systemic autoimmune disease involving multiple organs throughout the body. The health-seeking behaviours of SLE patients, with disease flares, knowledge of and attitudes toward the disease remain to be explored. OBJECTIVE To depict the healthcare-seeking behaviours in SLE patients, and examine factors associated with disease flares, knowledge of and attitudes toward the disease. METHODS A cross-sectional survey was conducted in 27 provinces in China. Descriptive statistical methods were used to depict demographic characteristics, medication and health status. Multivariable logistic regression models were used to identify factors associated with disease flares, change of medication and attitudes to the disease. An ordinal regression model was used to examine factors associated with knowledge of the treatment guidelines. RESULTS 1,509 patients with SLE were recruited, including 715 lupus nephritis (LN) patients. 40% of the SLE patients were primarily diagnosed with LN, and 12.4% developed LN (mean time: 5.2 years) after primarily diagnosed of SLE. Patients seeking healthcare from other cities accounted for 37%-75% of the medical consultation for SLE in provincial capital cities. Development of adverse events (AEs) and chronic diseases (CDs) during treatment and change of hospitals for medical consultation were significantly associated the flares. LN was associated with relapse, while patients with LN tended to be more familiar with the disease. Higher education was associated with the positive attitude. CONCLUSIONS Persistent monitoring and managing the potential AEs and CDs are essential after patients primarily receive treatment. Targeted measures for patients who seek healthcare from other cities in provincial capital cities should be adopted. Health education is also needed for SLE patients, especially in a milder health condition to improve their knowledge and maintain a positive attitude to the disease. CLINICALTRIAL Not applicable.