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

Abstract

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.

Investigating a structured diagnostic approach for chronic breathlessness in primary care: a mixed-methods feasibility cluster Randomised Controlled Trial

“…Through a feasibility study, we show that a future cRCT investigating a structured diagnostic approach for breathlessness is feasible in primary care, demonstrated by a 22% recruitment and 85% retention rate. Our results indicate that the proposed symptom-based investigative approach, with parallel completion of early investigations rather than the usual incremental approach (32, 33), supports the potential to improve time to investigations and diagnoses for patients. The patient reported outcomes indicated potential patient level benefit with this approach including symptoms and quality adjusted life years (EQ5D-5L at one year).…”

“…However, our data from CPRD highlights the current delays to diagnosis and associated worse outcomes from the latter approach. Our previous research highlighted the possible reasons for delay to diagnosis included challenges with symptom recognition, timely investigations and confirming a positive diagnosis (32). An incremental approach to investigation to rule out individual diagnoses was described by clinicians, which aligns with disease-specific guidelines which promote excluding a particular diagnosis, rather than a holistic approach to find all causes of a symptom.…”

“…Qualitative data was analysed using thematic analysis (31). Additional feasibility aims were to better understand 'usual care' through qualitative analysis of semi-structured interviews with patients and clinicians (reported elsewhere (32)).…”

Time to diagnosis and long-term outcomes for adults presenting with breathlessness

“…We suggest this analysis highlights the importance of timely diagnosis of underlying cardiorespiratory conditions and suggests earlier diagnosis offers meaningful therapeutic opportunity. The deployment of symptom-based diagnostic pathways in primary care aiming to achieve prompt diagnosis and treatment, has the potential therefore to improve outcomes (15, 16).…”

The Parallel World of Dyspnea: A Case Report

“…As such, it has been associated with poor quality of life and survival, usually leading the patient to seek healthcare at an ER or with their FD [ 7 ]. Therefore, some patients end up delaying seeking medical help because of neglecting their symptoms, health illiteracy, or lack of timely access to healthcare [ 8 ].…”