Systemic lupus erythematosus: what do Chinese patients and general practitioners know?

Abstract Background: Systemic lupus erythematosus is a chronic autoimmune disease with multiple systems involved. Traditionally, the diagnosis and management of SLE is only limited at secondary and tertiary hospitals. In recent years, China has vigorously carried out the hierarchical medical system, which placed the emphasis on primary health care. It is said that general practitioner should provide recognition, monitoring, management and education for SLE patients, as well as coordinate closely with rheumatologist to optimize prognosis. However, little is known about GPs’ knowledge and attitude towards SLE in China, as well as SLE patients. Methods: Data were collected from 113 SLE patients and 225 community GPs. Patients were recruited from a rheumatology clinic, Peking Union Medical Hospital from October to December 2018. All the GPs involved in the study work in the community health centers in Beijing. Based on the self-designed questionnaire, a face-to-face questionnaire and internet-based questionnaire were conducted among SLE patients and GPs, respectively. Data was analyzed using SPSS 23.0 and knowledge level was reported as percent correct. Results: The average score of patients' disease knowledge was 6.99±2.21. The results showed that higher levels of education were associated with higher levels of knowledge (𝜒2=4.231, P=0.04), as was being married (𝜒2=27.781, P<0.001), employed (𝜒2=63.865, P<0.001), follow-up duration ≥10 years (𝜒2=26.174, P<0.001), frequency of hospitalization ≥3 times (𝜒2=22.44, P<0.001), more organs and systems involved (𝜒2=90.36, P<0.001). Univariate linear regression analysis showed that patients with lower age, higher levels of education, being married and shorter follow-up duration had higher educational needs (P<0.05). Moreover, GPs answered 47% of the questions correctly. They showed poor awareness of SLE diagnostic classification, signs of recurrence, complications and follow-up management. Conclusions: There are many gaps in SLE patients’ and GPs’ knowledge of the disease. And both of them have expressed the educational requirements of their expected aspects. Understanding the view of the SLE patients and GPs may help clinicians and policymakers focus their assessments and develop strategies to improve the management of SLE patients.