PatientsLikeMe, Cambridge MA, USA

OBJECTIVES: (1) To understand the utility of using patient-reported data from an online Systemic Lupus Erythematosus (SLE) community for research, and (2) to understand the experience of living with SLE, including symptoms and treatments in a real-world environment.

METHODS: Drawing on data captured by PatientsLikeMe, we explored reported patient symptoms, side-effects, treatments, and reasons for stopping treatment. We generated Kaplan-Meier curves of treatment duration for patients reporting particular side effects. Finally, to infer additional symptom and treatment factors that were important to SLE patients, we analyzed free text in patient forums and profiles.

RESULTS: At the time of the research, PatientsLikeMe was being used by 5,714 SLE patients. With 2,570 PLM members with SLE (45%) reporting symptoms, lower back pain (53%), fatigue (52%), and joint pain (45%) were most likely to be rated as severe. In Forums, patients discuss pain, both general and localized, more than other frequently-measured symptoms, such as malar rashes. Of 5,026 members (88%) reporting treatments, hydroxychloroquine (73%), prednisone (63%), and OTC Naproxen (41%) were the most commonly used. Azathioprine, naproxen, and belimumab treatments were most often abandoned due to lack of efficacy, whereas hydroxychloroquine and methotrexate were more often abandoned due to side-effects. CONCLUSIONS: This study supports the ability of an online platform to capture important information on patient experience of disease and treatment, particularly in a poorly understood area such as lupus. Given the severity of side effects and abandonment of treatments, there is unmet need in SLE treatment.  Clinical trials have often focused on easily measurable endpoints (e.g., rashes), but symptoms such as pain and fatigue are worthy of deeper study. Research that reflects the the most common and severe symptoms will encourage development of higher-value lupus treatments.