Background Systemic lupus erythematosus (SLE) is a systemic autoimmune disease involving multiple organs throughout the body. The health care–seeking behaviors, disease progression of SLE, and patients' knowledge of and attitudes toward SLE have not been characterized in China. Objective The aim of this study was to depict the health care–seeking behaviors, disease progression, and medications in patients with SLE and to examine the factors associated with their disease flares, knowledge, and attitudes toward SLE in China. Methods We conducted a cross-sectional survey in 27 provinces in China. Descriptive statistical methods were used to depict the demographic characteristics, health care–seeking behaviors, medications, and health status. Multivariable logistic regression models were used to identify the factors associated with disease flares, medication changes, and attitudes toward SLE. An ordinal regression model was used to examine the factors associated with the knowledge of the treatment guidelines. Results We recruited 1509 patients with SLE, and 715 had lupus nephritis (LN). Approximately 39.96% (603/1509) of the patients with SLE were primarily diagnosed with LN, and 12.4% (112/906) developed LN (mean time 5.2 years) from non-LN. Patients whose registered permanent residences or workplaces in other cities from the same province and adjacent provinces seeking health care accounted for 66.9% (569/850) and 48.8% (479/981) of the patients with SLE in the provincial capital cities, respectively. Mycophenolate mofetil was the most commonly used immunosuppressive drug in patients without LN (185/794, 23.3%) and patients with LN (307/715, 42.9%). Femoral head necrosis (71/228, 31.1%) and hypertension (99/229, 43.2%) were the most common adverse event (AE) and chronic disease during treatment, respectively. Change of hospitals for medical consultation (odds ratio [OR] 1.90, 95% CI 1.24-2.90) and development of 1 chronic disease (OR 3.60, 95% CI 2.04-6.24) and AE (OR 2.06, 95% CI 1.46-2.92) and more were associated with disease flares. A pregnancy plan (OR 1.58, 95% CI 1.18-2.13) was associated with changes in medication. Only 242 (16.03%) patients with SLE were familiar with the treatment guidelines, and patients with LN tended to be more familiar with the disease (OR 2.20, 95% CI 1.81-2.68). After receiving treatment, 891 (59.04%) patients changed their attitudes toward SLE from fear to acceptance, and patients with college education or higher (OR 2.09, 95% CI 1.10-4.04) were associated with a positive attitude toward SLE. Conclusions A large proportion of patients seeking health care in the provincial capital cities of China migrated from other cities. Persistent monitoring of potential AEs and chronic diseases during SLE treatment and managing patients who changed hospitals for medical consultation are essential for controlling disease flares. Patients had insufficient knowledge about SLE treatment guidelines and would benefit from health education to maintain a positive attitude toward SLE.

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.