RT Journal Article
SR Electronic
T1 Patients’ perspectives on bronchiectasis: findings from a social media listening study
JF ERJ Open Research
JO erjor
FD European Respiratory Society
SP 00096-2021
DO 10.1183/23120541.00096-2021
VO 7
IS 3
A1 Irisz Delestre-Levai
A1 Stefano Aliberti
A1 Marta Almagro
A1 Chiara Carnini
A1 James D. Chalmers
A1 Sharath C. George
A1 Soumya Shukla
A1 Alan Timothy
A1 Maria Carmela De Vuono
YR 2021
UL http://openres.ersjournals.com/content/7/3/00096-2021.abstract
AB 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