“Breathlessness stops me doing everything.” Exploring the impact of chronic breathlessness due to advanced respiratory disease and exacerbating factors: a qualitative study

Introduction Breathlessness is a global, transdiagnostic problem, contributing to disability, reduced quality of life, and higher healthcare costs. As the global population ages and multimorbidity increases, the prevalence of breathlessness is expected to rise. Therefore, there is an urgent need to co- design new services and treatments for breathlessness. To achieve this, it is essential to understand the lived experience of breathlessness. This study aimed to explore the lived experience of chronic breathlessness, focusing on its impact and contributing factors that exacerbate breathlessness. Methods Semi-structured telephone interviews were conducted with adults experiencing chronic breathlessness caused by advanced malignant and non-malignant diseases (July–November 2020). The interviews were analysed using conventional content analysis. Results 25 patients with advanced disease and chronic breathlessness [(COPD: 13, lung cancer: 8, ILD: 3, bronchiectasis: 1), 17 male, median age 70 years (range 47–86), MRC Dyspnoea score 3 (2 −5)] were interviewed. Four key themes were identified: (1) the impact of breathlessness on daily activities, leading to increased dependence on others, (2) the effect of breathlessness on social interactions and personal relationships, resulting in isolation, (3) the Impact of living with multiple long–term conditions and environmental factors that worsen breathlessness, (4) cognitive, affective and behavioural responses to breathlessness. Conclusion Breathlessness significantly disrupts daily life, limiting independence and social engagement, with psychological and behavioural responses further restricting activity. An integrated, public health approach, collaborating with housing and environmental agencies is essential to address modifiable factors and reduce the burden on individuals and health care systems.