An international qualitative study to understand current and future barriers in clinical care in people with COPD: “When you can’t breathe, how could it not be unbearable?”

Chronic Obstructive Pulmonary Disease (COPD) is a progressive respiratory condition that substantially affects daily functioning and quality of life. Many people with COPD, particularly those at high exacerbation risk, do not achieve optimal outcomes despite available therapies. How patients perceive barriers to COPD care across different healthcare systems remains poorly understood. The CARINA study explored patient experiences of COPD care and identified individual- and system-level barriers to evidence-based management. CARINA is a multicountry qualitative interview study conducted in Australia, China, the Netherlands, the UK, and the United States. Adults (aged ≥ 40 years) with physician-diagnosed COPD receiving dual or triple inhaled therapy and reporting ≥ 2 moderate or ≥ 1 severe GOLD-defined exacerbations in the previous 12 months were interviewed remotely using semi-structured interviews. Transcripts were analysed using primarily inductive thematic analysis with constant comparison, informed by predefined sensitising concepts, and supported by a shared coding framework. Sixty participants were interviewed (66.7% male; age range, 50–84 years; 70.0% on triple therapy). Four overarching themes were identified across countries: (1) persistent daily burden and energy rationing shaping activity and participation; (2) fragmented routine care characterised by limited continuity, coordination, and communication; (3) uncertainty and delayed care-seeking during exacerbations, with minimal structured follow-up after recovery; and (4) cautious, conditional openness to future add-on treatments, shaped by expectations of meaningful benefit, safety, treatment burden, and preservation of perceived disease stability. Across healthcare systems, people with COPD experience care as fragmented and difficult to navigate, contributing to delayed or self-directed responses to exacerbations and limited follow-up after recovery. Patients prioritise maintaining everyday disease stability and approach new treatments pragmatically rather than optimistically. These findings highlight the importance of strengthening continuity of care, proactive follow-up, and patient-centred communication to better align COPD management and innovation with outcomes that are meaningful in everyday life.