Patients' perspectives on bronchiectasis: findings from a social media listening study. Issue 3 (2nd August 2021)

• Record Type: Journal Article
• Authors: Delestre-Levai, Irisz; Aliberti, Stefano; Almagro, Marta; Carnini, Chiara; Chalmers, James D.; George, Sharath C.; Shukla, Soumya; Timothy, Alan; De Vuono, Maria Carmela
• Is Part Of: ERJ open research. Volume 7:Issue 3(2021)
• Publication Date: 2021-08-02
• Subjects: Respiratory organs -- Diseases -- Periodicals; Respiration -- Periodicals; Respiration; Respiratory organs -- Diseases; Respiratory organs -- Diseases -- Treatment; Respiratory Tract Diseases; Electronic journals; Fulltext; Internet Resources; Periodicals; Periodical; 616.2005
• DOI: 10.1183/23120541.00096-2021
• Languages: English
• ISSNs: 2312-0541

Abstract

Although it is of great importance for healthcare professionals to ensure that patients' needs and concerns are valued and that they feel confident in the quality of the care they receive, there have been few studies specifically addressing the opinions, experiences and needs of patients with bronchiectasis, and more importantly the emotional impact of the disease, diagnosis and treatment. Using enterprise grade social listening tools, a comprehensive search around bronchiectasis was performed in five languages, on different social media platforms between January 2018 and December 2019 to obtain the perspectives of patients and caregivers from nine countries on symptoms, treatments and burden of the disease. Over 27 000 mentions of bronchiectasis were identified on social media channels, 38.8% of which were posted by patients and caregivers. Approximately 1600 posts were found on bronchiectasis symptoms, out of which persistent cough, shortness of breath and mucus production (22%, 20% and 18%, respectively) were the most commonly discussed. The research revealed that existing diagnostic tests often delay diagnosis or provide inaccurate results, leading to multiple rounds of consults and substantial delays in treatment initiation and management of the disease. Misdiagnosis was common across different age groups, especially among patients without severe symptoms, and this was associated with an emotional burden of anger, confusion, frustration and anxiety. Analysis of social media presents a new approach to derive insights on patients' experiences and emotions with bronchiectasis and has the potential to complement more traditional approaches to drive more patient-focused drug development. Patients' journey in bronchiectasis from symptoms and diagnosis to everyday life with the disease described for the first time through social media listening, a novel approach to gather unbiased insights into patients' experiences and emotions https://bit.ly/3yFLG5v