TY - JOUR
T1 - Patients' perspectives on bronchiectasis
T2 - findings from a social media listening study
AU - Delestre-Levai, Irisz
AU - Aliberti, Stefano
AU - Almagro, Marta
AU - Carnini, Chiara
AU - Chalmers, James D.
AU - George, Sharath C
AU - Shukla, Soumya
AU - Timothy, Alan
AU - De Vuono, Maria Carmela
N1 - Funding - 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.
Copyright ©The authors 2021.
PY - 2021/8/2
Y1 - 2021/8/2
N2 - 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.
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.
U2 - 10.1183/23120541.00096-2021
DO - 10.1183/23120541.00096-2021
M3 - Article
C2 - 34350285
SN - 2312-0541
VL - 7
JO - ERJ Open Research
JF - ERJ Open Research
IS - 3
M1 - 00096
ER -