Health Care–Seeking Behaviors, Disease Progression, Medications, Knowledge of, and Attitudes Toward Systemic Lupus Erythematosus in China: Cross-sectional Survey Study

Abstract

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.

The cross-regional settlement methods in hospitals and the treatment-seeking behavior of patients with malignant tumors in China: an evolutionary game model

“…Thus, medical expenses for patients with malignant tumors are significantly high. The cross-regional settlement follows the principle of “insurance catalog of the treatment location and reimbursement standards of the insured site.” Under the same treatment standards, some patients often receive more medical service reimbursements, such as reimbursements for targeted drugs, in cross-regional hospitals with sufficient medical insurance coverage, such as reimbursements for targeted drugs ( 27 ). Under settlements based on the medical insurance catalog of the treatment location, actual expenses are often lower than those for in-area treatment ( 23 ).…”

“…Secondly, concerning reimbursement ratios, the model assumes that the reimbursement rate for malignant tumor patients seeking treatment outside their insured region exceeds that within their insured location under equivalent treatment conditions. As previously mentioned, this study focuses on unplanned cross-regional medical treatments undertaken by patients in pursuit of superior medical resources; It has been validated that these areas typically have more comprehensive medical insurance catalogs, thereby affording higher reimbursement rates under the same treatment conditions ( 27 ). Thirdly, regarding the direct settlement reimbursement process, the model assumes uniformity across provinces: patients use the national medical insurance service platform’s APP or the WeChat Mini Program of the National Medical Insurance Administration to apply for cross-provincial medical treatments online and facilitate real-time settlements ( 45 ).…”

“…Since oncological treatment resources are primarily concentrated in first-tier cities and provincial capitals, patients with malignant tumors often opt to seek medical care in these areas to access more specialized expertise and enhanced treatment outcomes ( 17 ). Importantly, the settlement method for cross-regional medical treatment matches the medical insurance coverage of the treatment location, following the specific drug formulary, diagnostic procedure list, and medical consumables catalog ( 27 ). The costs of services not listed in these catalogs are the patient’s responsibility and are not covered by insurance.…”