PT  - JOURNAL ARTICLE
AU  - Irisz Delestre-Levai
AU  - Stefano Aliberti
AU  - Marta Almagro
AU  - Chiara Carnini
AU  - James D. Chalmers
AU  - Sharath C. George
AU  - Soumya Shukla
AU  - Alan Timothy
AU  - Maria Carmela De Vuono
TI  - Patients’ perspectives on Bronchiectasis: findings from a social media listening (SML) study
AID  - 10.1183/23120541.00096-2021
DP  - 2021 Jan 01
TA  - ERJ Open Research
PG  - 00096-2021
4099  - http://openres.ersjournals.com/content/early/2021/05/27/23120541.00096-2021.short
4100  - http://openres.ersjournals.com/content/early/2021/05/27/23120541.00096-2021.full
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 (BE), and more importantly the emotional impact of the disease, diagnosis and treatment.Using enterprise grade social listening tools, a comprehensive search around BE was performed in 5 languages, on different social media platforms between January 2018 and December 2019 to obtain the perspectives of patients and caregivers from 9 countries on symptoms, treatments and burden of the disease.Over 27 000 mentions of BE were identified on social media channels, 38.8% of which were posted by patients and caregivers. Approximately 1600 posts were found on BE 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 BE and has the potential to complement more traditional approaches to drive more patient-focused drug development.FootnotesThis manuscript has recently been accepted for publication in the European Respiratory Journal. It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJ online. Please open or download the PDF to view this article.Conflict of interest: Dr. Delestre-Levai reports personal fees from Chiesi Farmaceutici S.p.A., outside the submitted work;.Conflict of interest: Prof. Aliberti reports personal fees from Bayer Healthcare, personal fees from Grifols, personal fees from Astra Zeneca, personal fees from Zambon, grants and personal fees from Chiesi, grants and personal fees from INSMED, personal fees from GlaxoSmithKline, personal fees from Menarini, personal fees from ZetaCube Srl, grants from Fisher & Paykel, outside the submitted work; .Dr. Aliberti reports grants and personal fees from Bayer Healthcare, grants and personal fees from Aradigm Corporation, grants and personal fees from Grifols, personal fees from Astra Zeneca, personal fees from Basilea, personal fees from Zambon, personal fees from Novartis, personal fees from Raptor, grants and personal fees from Chiesi, personal fees from Actavis UK Ltd, personal fees from Horizon, grants and personal fees from INSMED, outside the submitted work; .Dr. Aliberti reports grants and personal fees from Bayer Healthcare, grants and personal fees from Aradigm Corporation, grants and personal fees from Grifols, personal fees from Astra Zeneca, personal fees from Basilea, personal fees from Zambon, personal fees from Novartis, personal fees from Raptor, grants and personal fees from Chiesi, personal fees from Actavis UK Ltd, personal fees from Horizon, grants and personal fees from INSMED, outside the submitted work; .Dr. Aliberti reports grants and personal fees from Bayer Healthcare, grants and personal fees from Aradigm Corporation, grants and personal fees from Grifols, personal fees from Astra Zeneca, personal fees from Basilea, personal fees from Zambon, personal fees from Novartis, personal fees from Raptor, grants and personal fees from Chiesi, personal fees from Actavis UK Ltd, personal fees from Horizon, grants and personal fees from INSMED, outside the submitted work; .Dr. Aliberti reports personal fees from Bayer Healthcare, personal fees from Grifols, personal fees from Astra Zeneca, personal fees from Zambon, grants and personal fees from Chiesi, grants and personal fees from INSMED, personal fees from GlaxoSmithKline, personal fees from Menarini, personal fees from ZetaCube Srl, grants from Fisher & Paykel, outside the submitted work;.Conflict of interest: Dr. Almagro has nothing to disclose.Conflict of interest: Dr. Carnini reports personal fees from Chiesi Farmaceutici S.p.A., outside the submitted work;.Conflict of interest: Dr. Chalmers reports grants and personal fees from Astrazeneca, grants and personal fees from Boehringer Ingelheim, personal fees from Chiesi, grants and personal fees from Glaxosmithkline, grants and personal fees from Insmed, grants and personal fees from Novartis, personal fees from Zambon, outside the submitted work;.Conflict of interest: Sharath C George reports personal fees from Chiesi Farmaceutici S.p.A, as a part of commercial engagement during the conduct of the study; personal fees from Chiesi Farmaceutici S.p.A, outside the submitted work; Sharath C George has disclosed that he is an employee of Decision Resources Group, part of Clarivate which was employed by Chiesi Farmaceutici S.p.A to conduct this research.Conflict of interest: Soumya Shukla reports personal fees from Chiesi Farmaceutici S.p.A as a part of commercial engagement during the conduct of the study; personal fees from Chiesi Farmaceutici S.p.A, outside the submitted work; . Soumya Shukla has disclosed that she is an employee of Decision Resources Group, part of Clarivate which was employed by Chiesi Farmaceutici S.p.A to conduct this research.Conflict of interest: Dr. timothy has nothing to disclose.Conflict of interest: Dr. De Vuono reports personal fees from Chiesi Farmaceutici S.p.A, outside the submitted work.