Abstract Rationale The Bronchiectasis Understanding and Research on Daily Experiences and Needs (BURDEN) study is the first multinational initiative assessing the impact of bronchiectasis from the perspectives of people living with bronchiectasis and their caregivers. Methods Using a mixed methods approach, qualitative interviews were carried out that informed a quantitative online patient survey. Interview and survey materials were co-created with healthcare professionals and patient experts. Survey participants were recruited from December 2024 to April 2025 using online and offline awareness campaigns. People with, or who provided daily care for someone with, a bronchiectasis diagnosis (without cystic fibrosis), and ≥1 exacerbation in the past year, aged ≥18 years, and living in the USA, UK, Germany, France, Italy, or Spain, were included. Descriptive statistics were reported and the additional negative impact of exacerbations (vs periods when patients were not experiencing exacerbations) was evaluated on each dimension of daily living (on a scale from 1 “No additional negative impact at all” to 10 “Extreme amount of additional negative impact”). Results In total, 1,050 patients and 88 caregivers were included. 54.2% of patients received their diagnosis ≥5 years ago, and in the previous 12 months, 26.5%, 28.2%, and 45.3% of patients had experienced 1, 2, and ≥3 exacerbations, respectively. 76.8% of patients (n = 652) reported a decline in health status following each exacerbation. Exacerbations had an additional negative impact on all dimensions of daily living, particularly emotional well-being and social life; this impact increased with exacerbation frequency (Figure). On average, the highest additional negative impact of exacerbations was on emotional well-being, at a mean (SD) of 6.2 (2.8), and 40.5% of patients (n = 334) rated the additional negative impact of an exacerbation at 8 or higher. Even when patients were not experiencing exacerbations, there was anxiety around future exacerbations, with patients rating the mean (SD) negative impact of this anxiety at 6.5 (2.7). The most reported emotional concern was increased insecurity about the future, both among patients with bronchiectasis (76.2%, n = 632) and caregivers (71.1%, n = 40). Caregivers also reported that the impact of supporting a patient with bronchiectasis included an increase in feeling anxious or nervous (53.6%, n = 30) and depressed or sad (53.7%, n = 29). Conclusions The overall impact of exacerbations on daily living for patients is substantial and multidimensional, highlighting the importance of preventing exacerbations. Even outside of exacerbations, bronchiectasis symptoms have a substantial negative emotional impact on patients and caregivers, particularly related to insecurity about the future. This abstract is funded by: Insmed Incorporated
Polverino et al. (Fri,) studied this question.