Dataset Information

Insights from Social Media on the Patient Experience of Living With Rare Eosinophil-Driven Diseases.

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.

SUBMITTER: Strobel MJ

PROVIDER: S-EPMC9756368 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature

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Insights from Social Media on the Patient Experience of Living With Rare Eosinophil-Driven Diseases.

Strobel Mary Jo MJ Alves Debbie D Roufosse Florence F Antoun Zeina Z Kwon Namhee N Baylis Lee L Wechsler Michael E ME

Journal of patient experience 20221213

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 ...[more]

PMID: 36530646

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Dataset Information

Insights from Social Media on the Patient Experience of Living With Rare Eosinophil-Driven Diseases.

Publications

Insights from Social Media on the Patient Experience of Living With Rare Eosinophil-Driven Diseases.

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