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 (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 1,600 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.