Balistreri, Lisa

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.

Microvascular remodeling and capillary repopulation can occur after autologous hematopoietic stem cell transplant (HSCT) in patients with systemic sclerosis and systemic lupus erythematosus (SLE). We aim to report evidence for microvascular remodeling after autologous HSCT as observed by nailfold videocapillaroscopy (NVC). We describe a rare occurrence of features consistent with systemic sclerosis and SLE in a 33-year-old female with a complex clinical course refractory to conventional treatments, ultimately requiring autologous HSCT. We performed NVC before and after HSCT using optical video and light microscopy. At the microvascular level, morphologic changes in the capillary vascular bed were observed after HSCT. Pretransplant damage in capillary structure was noted as evidenced on NVC with architectural loss, ramifications, capillary drop, and decreased density. Posttransplant NVC revealed an increase in capillary density with evidence of microvascular remodeling. Further studies on the clinical use and impact of microvascular remodeling on disease progression are needed and looking into the application of NVC scoring to assess clinical response would be meaningful.

Abstract Hydroxychloroquine (HCQ) induced cardiotoxicity is a rare diagnosis and is often associated with chronic use of the medication. It has been shown that chronic HCQ use is associated with a drug-induced cardiomyopathy mainly driven by acquired lysosomal storage defects leading to hypertrophy and conduction abnormalities. As the only proven treatment is the discontinuation of the offending agent, prompt recognition is required to avoid further exposure to the drug and potential progression of disease. History, physical examination and advanced imaging modalities are useful diagnostic tools, but more invasive testing with an endomyocardial biopsy is required for definitive diagnosis. We present a descriptive case series of ten patients that were diagnosed with biopsy proven HCQ cardiotoxicity.