Online health communities and research networks such as PatientsLikeMe (PLM) capture patient perspectives of diseases, including systemic lupus erythematosus (SLE). We performed a retrospective observational study of data provided by patients in the PLM SLE community to characterize demographics, clinical characteristics, patient experience, and symptom impact.
Adults who registered with PLM in 2011-2017 and reported SLE diagnosis and treatment with one or more SLE-related drug (antimalarials, immunosuppressives, corticosteroids, calcineurin inhibitors, or biologics) were included in the analysis. Information reported within 30 days from PLM registration was used to assess patient eligibility; demographics and clinical characteristics; and primary outcome measures of SLE treatments, symptoms, primary lupus manifestations, and comorbidities.
Among 21,101 PLM members included in this analysis, median ages at registration, onset of SLE symptoms, and SLE diagnosis were 46 years (interquartile range [IQR] 38-53, n = 21,101), 30 years (IQR 21-39; n = 6489), and 36 years (IQR 27-44; n = 6936), respectively. Most patients were female (96.8%, n = 20,370). Country of residence was reported by 19,502 patients (92.4%), of whom 18,491 (94.8%) were US residents. Race was recorded by 17,994 patients (85.3%), of whom 67.8% were white and 22.4% were black/African American. Patients reported a mean of 2.2 SLE-related medications, including antimalarials (83.8%), corticosteroids (78.8%), immunosuppressives (32.3%), and biologics (9.4%). Fatigue, pain, and joint pain were rated as moderate or severe by at least 80% of patients who reported these symptoms. Reported primary lupus manifestations and comorbidities included fibromyalgia (7.9%), discoid lupus (6.8%), lupus nephritis (6.3%), rheumatoid arthritis (4.8%), subacute cutaneous lupus (4.7%), central nervous system lupus (3.9%), Sjögren’s syndrome (3.9%), and lupus pneumonitis (3.1%).
Age, sex, and race of patients in the PLM SLE community are broadly consistent with characteristics of the general SLE population in the United States. The PLM SLE population may provide valuable data on self-reported patient experience. Plain language summary available for this article.

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