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Patients’ Experiences of Cancer Diagnosis as a Result of an Emergency Presentation: A Qualitative Study

Black, G; Sheringham, J; Ridge, M; Spencer-Hughes, V; Lyons, M; Williams, C; Fulop, NJ; (2015) Patients’ Experiences of Cancer Diagnosis as a Result of an Emergency Presentation: A Qualitative Study. Plos One , 10 (8) , Article e0135027. 10.1371/journal.pone.0135027. Green open access

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Abstract

Cancers diagnosed following visits to emergency departments (ED) or emergency admissions (emergency presentations) are associated with poor survival and may result from preventable diagnostic delay. To improve outcomes for these patients, a better understanding is needed about how emergency presentations arise. This study sought to capture patients' experiences of this diagnostic pathway in the English NHS. Eligible patients were identified in a service evaluation of emerge ncy presentations and invited to participate. Interviews, using an open-ended biographical structure, captured participants' experiences of healthcare services before diagnosis and were analysed thematically, informed by the Walter model of Pathways to Treatment and NICE guidance in n iterative process. Twenty-seven interviews were conducted. Three typologies were identified: A: Rapid investigation and diagnosis, and B: Repeated cycles of healthcare seeking and appraisal without resolution, with two variants where B1 appears consistent with guidance and B2 has evidence that management was not consistent with guidance. Most patients’ (23/27) experiences fitted types B1 and B2. Potentially avoidable breakdowns in diagnostic pathways caused delays when patients were conflicted by escalating symptoms and a benign diagnosis given earlier by doctors. ED was sometimes used as a conduit to rapid testing by primary care clinicians, although this pathway was not always successful. This study draws on patients' experiences of their diagnosis to provide novel insights into how emergency presentations arise. Through these typologies, we show that the typical experience of patients diagnosed through an emergency presentation diverges significantly from normative pathways even when there is no evidence of serious service failures. Consultations were not a conduit to diagnosis when they inhibited patients’ capacity to appraise their own symptoms appropriately and when they resulted in a reluctance to seek further healthcare. The findings also point to potentially avoidable breakdowns in the diagnostic process. In particular, to encourage patients to return to the GP if symptoms escalate, a stronger emphasis is needed on diagnostic uncertainty in discussions between patients and doctors in both primary and secondary care. To improve appropriate access to rapid investigations, systems are needed for primary care to communicate directly with secondary care at the time of referral.

Type: Article
Title: Patients’ Experiences of Cancer Diagnosis as a Result of an Emergency Presentation: A Qualitative Study
Open access status: An open access version is available from UCL Discovery
DOI: 10.1371/journal.pone.0135027
Publisher version: http://dx.doi.org/10.1371/journal.pone.0135027
Language: English
Additional information: © 2015 Black et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Applied Health Research
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Biology and Cancer Dept
URI: https://discovery.ucl.ac.uk/id/eprint/1470230
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