Bell, Lucy

Abstract Background/Aims Fibromyalgia has many unmet needs relating to treatment and delivery of effective and evidence-based healthcare is lacking. We analyzed social media conversations to understand patients’ perspectives of the lived experience of fibromyalgia, factors reported to trigger flares of pain, treatments being discussed; and identify barriers and opportunities to improve healthcare delivery. Methods A non-interventional retrospective analysis accessed detail rich conversations about fibromyalgia patients’ experiences with data curated from 400 million global documents and 714,000 documents, including a fibromyalgia language tag, between May 2019 and April 2021. Data were analyzed via qualitative and quantitative analyses. Results Fibromyalgia conversations were most numerous on Twitter and Reddit and conversations trends remained stable over time. There were numerous environmental and modifiable triggers ranging from (most frequently) stress and anxiety to various foods. Arthritis and irritable bowel syndrome (IBS) were the most frequently associated comorbidities. Patients with fibromyalgia reported a wide range of symptoms, with pain a cardinal feature. Massage, meditation and acupuncture domains were the most reported treatment modalities. Opportunities to improve healthcare delivered by medical providers were identified with current frustration relating to lack of acknowledgement of their disease, minimization of symptoms, and providers inadequately meeting their care needs. Conclusion We developed a comprehensive large-scale study which emphasizes advanced artificial intelligence algorithms application in real-world research design. Through the extensive encapsulation of patient perspectives, we have outlined habitual symptoms, triggers, and treatment modalities that provide a durable foundation to address gaps in healthcare provision. Disclosure L. Bell: Other; Lucy Bell was a former contractor based at Black Swan Data, and a volunteer at White Swan. She is currently a full-time employee at White Swan. B. Fordham: Other; Beth Fordham is an employee of White Swan Charity, who provided the dataset for this study, and was previously an employee of Black Swan Data, of which White Swan is a separate entity. S. Mumtaz: None. R. Yaman: None. L. Balistreri: None. R.R. Butendieck: None. A. Irani: None.

Background and Objectives: Fibromyalgia has many unmet needs relating to treatment, and the delivery of effective and evidence-based healthcare is lacking. We analyzed social media conversations to understand the patients’ perspectives on the lived experience of fibromyalgia, factors reported to trigger flares of pain, and the treatments being discussed, identifying barriers and opportunities to improve healthcare delivery. Methods: A non-interventional retrospective analysis accessed detail-rich conversations about fibromyalgia patients’ experiences with 714,000 documents, including a fibromyalgia language tag, which were curated between May 2019 and April 2021. Data were analyzed via qualitative and quantitative analyses. Results: Fibromyalgia conversations were found the most on Twitter and Reddit, and conversation trends remained stable over time. There were numerous environmental and modifiable triggers, ranging from the most frequent trigger of stress and anxiety to various foods. Arthritis and irritable bowel syndrome (IBS) were the most frequently associated comorbidities. Patients with fibromyalgia reported a wide range of symptoms, with pain being a cardinal feature. The massage, meditation and acupuncture domains were the most reported treatment modalities. Opportunities to improve healthcare delivered by medical providers were identified with current frustration relating to a lack of acknowledgement of their disease, minimization of symptoms and inadequately meeting their care needs. Conclusions: We developed a comprehensive, large-scale study which emphasizes advanced natural language processing algorithm application in real-world research design. Through the extensive encapsulation of patient perspectives, we outlined the habitual symptoms, triggers and treatment modalities which provide a durable foundation for addressing gaps in healthcare provision.