TY  - JOUR
AU  - Spies, Erica
AU  - Andreu, Thomas
AU  - Hartung, Matthias
AU  - Park, Josephine
AU  - Kamudoni, Paul
PY  - 2024
DA  - 2024/2/2
TI  - Exploring the Perspectives of Patients Living With Lupus: Retrospective Social Listening Study
JO  - JMIR Form Res
SP  - e52768
VL  - 8
KW  - systemic lupus erythematosus
KW  - SLE
KW  - cutaneous lupus erythematosus
KW  - CLE
KW  - quality of life
KW  - health-related quality of life
KW  - HRQoL
KW  - social media listening
KW  - lupus
KW  - rare
KW  - cutaneous
KW  - social media
KW  - infodemiology
KW  - infoveillance
KW  - social listening
KW  - natural language processing
KW  - machine learning
KW  - experience
KW  - experiences
KW  - tagged
KW  - tagging
KW  - visualization
KW  - visualizations
KW  - knowledge graph
KW  - chronic
KW  - autoimmune
KW  - inflammation
KW  - inflammatory
KW  - skin
KW  - dermatology
KW  - dermatological
KW  - forum
KW  - forums
KW  - blog
KW  - blogs
AB  - Background: Systemic lupus erythematosus (SLE) is a chronic autoimmune inflammatory disease affecting various organs with a wide range of clinical manifestations. Cutaneous lupus erythematosus (CLE) can manifest as a feature of SLE or an independent skin ailment. Health-related quality of life (HRQoL) is frequently compromised in individuals living with lupus. Understanding patients’ perspectives when living with a disease is crucial for effectively meeting their unmet needs. Social listening is a promising new method that can provide insights into the experiences of patients living with their disease (lupus) and leverage these insights to inform drug development strategies for addressing their unmet needs. Objective: The objective of this study is to explore the experience of patients living with SLE and CLE, including their disease and treatment experiences, HRQoL, and unmet needs, as discussed in web-based social media platforms such as blogs and forums. Methods: A retrospective exploratory social listening study was conducted across 13 publicly available English-language social media platforms from October 2019 to January 2022. Data were processed using natural language processing and knowledge graph tagging technology to clean, format, anonymize, and annotate them algorithmically before feeding them to Pharos, a Semalytix proprietary data visualization and analysis platform, for further analysis. Pharos was used to generate descriptive data statistics, providing insights into the magnitude of individual patient experience variables, their differences in the magnitude of variables, and the associations between algorithmically tagged variables. Results: A total of 45,554 posts from 3834 individuals who were algorithmically identified as patients with lupus were included in this study. Among them, 1925 (authoring 5636 posts) and 106 (authoring 243 posts) patients were identified as having SLE and CLE, respectively. Patients frequently mentioned various symptoms in relation to SLE and CLE including pain, fatigue, and rashes; pain and fatigue were identified as the main drivers of HRQoL impairment. The most affected aspects of HRQoL included “mobility,” “cognitive capabilities,” “recreation and leisure,” and “sleep and rest.” Existing pharmacological interventions poorly managed the most burdensome symptoms of lupus. Conversely, nonpharmacological treatments, such as exercise and meditation, were frequently associated with HRQoL improvement. Conclusions: Patients with lupus reported a complex interplay of symptoms and HRQoL aspects that negatively influenced one another. This study demonstrates that social listening is an effective method to gather insights into patients’ experiences, preferences, and unmet needs, which can be considered during the drug development process to develop effective therapies and improve disease management. 
SN  - 2561-326X
UR  - https://formative.jmir.org/2024/1/e52768
UR  - https://doi.org/10.2196/52768
UR  - http://www.ncbi.nlm.nih.gov/pubmed/38306157
DO  - 10.2196/52768
ID  - info:doi/10.2196/52768
ER  -