Patients' perspectives on bronchiectasis: findings from a social media listening study.

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.

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Copyright ©The authors 2021.

Déclaration de conflit d'intérêts

Conflict of interest: I. Delestre-Levai was employed by and received salary from Chiesi Farmaceutici SpA. Conflict of interest: S. Aliberti reports personal fees from Bayer Healthcare, Grifols, AstraZeneca and Zambon, grants and personal fees from Chiesi and INSMED, personal fees from GlaxoSmithKline, Menarini and ZetaCube Srl, and 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. Conflict of interest: M. Almagro has nothing to disclose. Conflict of interest: C. Carnini is an employee of Chiesi Farmaceutici SpA. Conflict of interest: J.D. Chalmers reports grants and personal fees from AstraZeneca and Boehringer Ingelheim, personal fees from Chiesi, grants and personal fees from GlaxoSmithKline, Insmed and Novartis, and personal fees from Zambon, outside the submitted work. Conflict of interest: S.C. George reports personal fees from Chiesi Farmaceutici SpA as part of commercial engagement during the conduct of the study; and personal fees from Chiesi Farmaceutici SpA outside the submitted work. S.C. George has disclosed that he is an employee of Decision Resources Group, part of Clarivate, which was employed by Chiesi Farmaceutici SpA to conduct this research. Conflict of interest: S. Shukla reports personal fees from Chiesi Farmaceutici SpA as part of commercial engagement during the conduct of the study; and personal fees from Chiesi Farmaceutici SpA outside the submitted work. S. Shukla has disclosed that she is an employee of Decision Resources Group, part of Clarivate, which was employed by Chiesi Farmaceutici SpA to conduct this research. Conflict of interest: A. Timothy has nothing to disclose. Conflict of interest: M.C. De Vuono reports personal fees from Chiesi Farmaceutici SpA outside the submitted work.