OBJECTIVES: Ensuring the voice of patients is heard in developing new therapies for rare diseases, like CLE, can be challenging. This study aimed to explore the feasibility of identifying patients with CLE in social media platforms and their experiences of living with CLE, including health-related quality of life (HRQoL) and unmet needs.

METHODS: This exploratory retrospective social listening study was executed across 13 English-speaking social media platforms from October 2019 through January 2022. Keywords defining CLE were used to search for relevant posts. NLP algorithms were applied to code concepts related to disease burden, HRQoL, and treatment experience. Non-NLP analyses included descriptive statistics of key themes/concepts and thematic analysis to describe patient experiences.

RESULTS: 106 CLE patients with 243 associated documents were algorithmically identified (including 118/148 mentions of symptoms/body-area of involvement). Rash was the most common symptom mentioned (23% across all symptom mentions), followed by pain (21%) and fatigue (16%). The most frequently reported area of involvement/body part affected was skin (26% of mentions), followed by face (14%). HRQoL impacts were described by 47 patients (78 documents), with negative feelings and limitations on recreation and leisure being the most discussed (26% and 18% of documents discussing HRQoL, respectively). Non-drug (n=16) and drug (n=49) treatment options were discussed. The most mentioned drug agents (discussed in 82 documents) were hydroxycholoroquine (35% of documents), methotrexate (24%), and prednisone (7%). Negative experiences related to current treatments included fatigue, brain fog and lack of sleep.

CONCLUSIONS: This social listening study was able to describe patients’ experience with CLE. While its generalizability could be limited by the low number of patients identified, this study was able to describe what contributes to reduced HRQoL, as well as healthcare and treatment experiences. Social listening can be one important component of understanding patient experiences in rare disease.