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.

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 ].…”

Exploring the Experience of Breathlessness with the Common-Sense Model of Self-Regulation (CSM)

“…Findings were similar in a survey of over 4000 German adults (40% with at least one chronic condition) [ 44 ] which identified that preferred sources of health information were health professionals (general practitioners (72.1%), specialists (39.5%), and pharmacists (31.6%)) rather than the internet (31.5%), although reasons for these preferences were not reported. Subsequent to the conduct of these studies, the coronavirus disease 2019 (COVID-19) pandemic disrupted an already unpredictable diagnostic pathway for people experiencing breathlessness [ 45 , 46 ], which prompted an explosion of online health information and misinformation [ 47 ], a shift to remote delivery of healthcare [ 48 ], and the emergence of persistent breathlessness after COVID-19 infection [ 49 ]. Research into the impact of virtual information sources on breathlessness representations in this rapidly changing environment is indicated.…”

Prioritising universal access to respiratory diagnostics

“…9,10 In their qualitative study of clinician and commissioner stakeholders in England, Doe et al, report barriers to providing spirometry in primary care and opportunities for improvement. 11 Before the COVID-19 pandemic, challenges included a lack of clear and consistent funding for providing spirometry services, variation in the quality of spirometry performance and interpretation, and an imperfect accreditation process for achieving competency in spirometry. 11 With spirometry halted during the pandemic, a huge backlog of cases increased pressure on existing services, adding to pre-pandemic challenges.…”

“…11 Before the COVID-19 pandemic, challenges included a lack of clear and consistent funding for providing spirometry services, variation in the quality of spirometry performance and interpretation, and an imperfect accreditation process for achieving competency in spirometry. 11 With spirometry halted during the pandemic, a huge backlog of cases increased pressure on existing services, adding to pre-pandemic challenges. 12 Some services never re-started.…”

“…3 The findings from Doe et al, provide possible reasons, including guidance for restarting spirometry perceived as confusing and service providers overwhelmed by the number of competing priorities post-pandemic. 11 Spirometry delivered close to patient's homes, by trained, competent professionals was widely sought after. 11 In England, Community Diagnostic Centres were recommended to increase capacity for diagnostic testing in convenient locations for patients.…”