{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T02:17:44Z","timestamp":1787019464856,"version":"build-2736575974"},"reference-count":20,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2022,1,1]],"date-time":"2022-01-01T00:00:00Z","timestamp":1640995200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"GSK"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Patient Experience"],"published-print":{"date-parts":[[2022,1]]},"abstract":"<jats:p>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.<\/jats:p>","DOI":"10.1177\/23743735221143953","type":"journal-article","created":{"date-parts":[[2022,12,14]],"date-time":"2022-12-14T02:57:35Z","timestamp":1670986655000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":11,"title":["Insights from Social Media on the Patient Experience of Living With Rare  Eosinophil-Driven Diseases"],"prefix":"10.1177","volume":"9","author":[{"given":"Mary Jo","family":"Strobel","sequence":"first","affiliation":[{"name":"American Partnership for Eosinophilic Disorders (APFED), Atlanta, GA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Debbie","family":"Alves","sequence":"additional","affiliation":[{"name":"APFED Volunteer, HES patient and advocate, Washington, DC, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Florence","family":"Roufosse","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, H\u00f4pital Erasme, Universit\u00e9 Libre de Bruxelles, Brussels, Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zeina","family":"Antoun","sequence":"additional","affiliation":[{"name":"GSK, Wavre, Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Namhee","family":"Kwon","sequence":"additional","affiliation":[{"name":"GSK, Middlesex, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lee","family":"Baylis","sequence":"additional","affiliation":[{"name":"GSK, Raleigh, NC, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael E","family":"Wechsler","sequence":"additional","affiliation":[{"name":"Department of Medicine, National Jewish Health, Denver, CO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2022,12,13]]},"reference":[{"key":"bibr1-23743735221143953","doi-asserted-by":"publisher","DOI":"10.1038\/nri3341"},{"key":"bibr2-23743735221143953","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.25617"},{"key":"bibr3-23743735221143953","unstructured":"Vasculitis Foundation. 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