Why carry out this study?

Systemic lupus erythematosus (SLE) presents a substantial disease burden on patients and their quality of life.

Online health communities such as PatientsLikeMe (PLM) capture the patients’ perspectives on SLE and provide unique insights into chronic diseases to improve health care.

Characteristics and outcomes of PLM members with SLE were analyzed to evaluate comparability of these patients with the wider SLE population.

What was learned from this study?

In 21,101 patients comprising the PLM SLE community, demographics, clinical characteristics, SLE medication use, and most frequently reported symptoms (e.g. fatigue and pain) and comorbidities were broadly consistent with the general US SLE population.

The PLM SLE population may be a valuable source of patient-reported data that could be used to obtain insights into patients’ experiences and symptoms outside the clinic.