Diagnostic delays for breathlessness: a qualitative study in primary care to understand current care and inform future pathways

Background: Evidence to understand the delays to diagnosis for patients presenting with breathlessness is lacking. Aim: To explore current care through the experiences of adults presenting with chronic breathlessness awaiting a diagnosis and primary care clinicians. Design and Setting: Qualitative study with adults presenting with chronic breathlessness, and clinicians in primary care. Methods: Semi-structured interviews were conducted with patients and clinicians. Participants were recruited from a feasibility cluster randomised controlled trial investigating a structured diagnostic pathway for breathlessness. The interview guide explored experiences of help-seeking for breathlessness, the diagnostic process, and associated healthcare. The transcripts were analysed using thematic analysis supported by NVivo software. Results: 34 patients (mean [SD] age 68 [10.8] years, 20 [59%] female), and 10 clinicians (mean [SD] 17 [6.3] years of experience, 5 (50%) female) were interviewed. Five themes were identified: 1) Recognising and validating symptoms of breathlessness is an important first step; 2) Clinical decision-making for breathlessness is complex; 3) Difficult conversations arise when a disease-related diagnosis is not confirmed; 4) Disease management rather than symptom management is prioritised by clinicians; 5) Patient experience is influenced by clinician communication style. Conclusion: Our findings indicate potential explanations for delays to diagnosis for patients with chronic breathlessness. Interventions are needed to enhance symptom recognition, include alternative approaches to incremental investigation, expand the concept of diagnosis beyond a ‘disease label’ to improve communication, with the ultimate aim of earlier diagnosis and management to improve patient outcomes.