OBJECTIVES: To explore patients’ experience of living with SLE, including experience of symptoms, impact on health-related quality of life (HRQoL), treatments, and perspective on unmet needs.

METHODS: This retrospective social listening study was executed across 13 English-speaking social media platforms from October 1, 2019 through January 24, 2022. Natural Language Processing techniques filtered and aggregated relevant patient-reported content and algorithmically coded key concepts. Non-NLP analysis included descriptive statistics of concepts, and thematic content analysis to describe patient experiences.

RESULTS: A total of 1,925 patients with SLE and 5,636 associated documents were algorithmically identified (including 2,029/2,199 mentions of symptoms/HRQoL topics). Pain, fatigue, and rash (30.1%, 19.0%, and 11.8% respectively) were the most mentioned symptoms by patients with pain and fatigue described as the most burdensome. The most common HRQoL topics discussed by patients included negative feelings (despondency, guilt, sadness, despair, anxiety, etc.), recreation and leisure, and healthcare availability (23.7%, 14.3%, and 9.3% respectively). Patients discussed drug (1566 mentions across 1015 patients) and non-drug therapies (482 mentions across 267 patients) as treatment options. The most common drug therapies mentioned included hydroxychloroquine, prednisone, and methotrexate (34.4%, 20.6%, and 19.3% of drug therapy mentions, respectively), while exercise was the most common non-drug therapy mentioned (46.1% of all non-drug therapy mentions). Patients described some existing standard of care treatments to be associated with a decrease in HRQoL as all symptoms and experience of negative effects could not be alleviated.

CONCLUSIONS: Our findings reveal varying severity and frequency of symptoms and overall HRQoL impacts associated with SLE across patients. Patients also described symptoms to not be fully alleviated with current treatment options. These perspectives highlight high levels of disease burden and unmet needs should be considered during drug discovery and development processes.