ArticleJournal of patient experience2022
Insights from Social Media on the Patient Experience of Living With Rare Eosinophil-Driven Diseases.
Article in Journal of patient experience, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
11 citing papers in PubMed, 14 citations in OpenAlex.
- Review
- Estimation of Health Utility Values for Eosinophilic Granulomatosis With Polyangiitis.PharmacoEconomics - open · 2026Article
- Mepolizumab reduces systemic corticosteroid-related toxicities and healthcare burden in patients with eosinophilic granulomatosis with polyangiitis and hypereosinophilic syndrome: a retrospective database study.Frontiers in allergy · 2026Article
- Living with Eosinophilic Granulomatosis with Polyangiitis (EGPA): Podcast of a Patient-Physician Discussion.Advances in therapy · 2025Article
- Burden of hypereosinophilic syndromes in the United States: Patients' perspective.The journal of allergy and clinical immunology. Global · 2025Article
- Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations.Orphanet journal of rare diseases · 2025Review
- High Disease Burden and Oral Corticosteroid Use in Patients with Hypereosinophilic Syndrome and Eosinophilic Granulomatosis with Polyangiitis: Country-Level Insights into Real-World Management in Europe.Journal of clinical medicine · 2025Article
- Tracking Public Interest in Rare Diseases and Eosinophilic Disorders in Germany: Web Search Analysis.JMIR infodemiology · 2025Article
- Primary care physicians play a crucial role in diagnosing and managing rare eosinophilic diseases: HES and EGPA.Frontiers in medicine · 2025Review
- Best practices for the collection and analysis of patient experience data from social media for patient-focused drug development.Frontiers in medicine · 2025Review
- Patient perceptions of disease burden and treatment of myasthenia gravis based on sentiment analysis of digital conversations.Scientific reports · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 6 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Eosinophilic granulomatosis with polyangiitis (EGPA) and hypereosinophilic syndrome (HES) are driven by persistently high eosinophil numbers, causing damage to tissues and organs. As rare diseases, they are often underappreciated by healthcare professionals. Using a social listening analysis, we collected patient and caregiver comments relating to EGPA and HES made on online social platforms between 1 January 2019 and 31 May 2020, in English, French, and German. Results were classified into key areas of interest. In total, 746 comments with consent to publish were collected mentioning EGPA, and 39 were identified mentioning HES. The most common theme was sharing of personal experiences (EGPA: 77%; HES: 100%). Diagnosis, including diagnosis delays and misdiagnosis, was mentioned in 33% of comments for EGPA, and 82% for HES. Other common themes included seeking and giving advice, symptoms, and treatments. These insights highlight the views and unmet needs of people living with EGPA and HES. Further work should improve disease awareness and effective communications among healthcare professionals and patients with these conditions.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.