The journey to bronchiectasis diagnosis and care: an EMBARC/ELF patient survey

Bronchiectasis, once a neglected condition, is receiving increased awareness. However, bronchiectasis is frequently misdiagnosed and remains untreated for years. We aimed to find out experiences of people with bronchiectasis in receiving the correct diagnosis and care. A survey questioningdemographics, journey to diagnosis and care, testing and treatment, chest clearance, and nebulizer preferences was developed by EMBARC members and refined by members of the European Lung Foundation (ELF) bronchiectasis patient advisory group. The survey was translated and made available online in nine languages from Sep. 2020 to March 2021. On February 8, there were 665 responses, 94% self- identified as patients and 6% as caregivers of people with bronchiectasis. 82% were female and 57% were over 55 years of age. 167 respondents (26%) reported having symptoms for 10 years or longer before being diagnosed with bronchiectasis. 170 (26%) reported having been misdiagnosed with asthma or another disease. When having chest infections, 241 respondents (56%) found it difficult or very difficult to access a primary care physician with a good understanding of chest infections. 240 (49%) reported that obtaining a sputum culture when exacerbating was difficult or very difficult. Most respondents (547, 93%) reported having productive cough. However, only 404 (69%) reported they had been advised to perform chest clearance, and 411 (70%) had been instructed on airway clearance. Delays in diagnosing bronchiectasis and impaired access to recommended care are common in bronchiectasis. Patients’ experiences highlight a need for improving education of primary care regarding bronchiectasis management.