Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study

Elka Humphrys; Fiona M Walter; Greg Rubin; Jon D Emery; Margaret Johnson; Anthony Richards; Rebecca C Fitzgerald; Yirupaiahgari KS Viswanath; Jenni Burt

doi:10.3399/bjgpopen20X101001

BJGP Open (Jan 2020)

Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study

Elka Humphrys,
Fiona M Walter,
Greg Rubin,
Jon D Emery,
Margaret Johnson,
Anthony Richards,
Rebecca C Fitzgerald,
Yirupaiahgari KS Viswanath,
Jenni Burt

Affiliations

Elka Humphrys: Research Associate, The Healthcare Improvement Studies Institute, University of Cambridge, Cambridge, UK
Fiona M Walter: Principal Researcher in Primary Care Cancer Research, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
Greg Rubin: Emeritus Professor of General Practice and Primary Care, Institute of Health and Society, Newcastle University, Newcastle-upon-Tyne, UK
Jon D Emery: Herman Professor of Primary Care Cancer Research, Department of General Practice and Primary Health Care, Centre for Cancer Research, University of Melbourne, Melbourne, Australia
Margaret Johnson: Lay Member, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
Anthony Richards: Lay Member, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
Rebecca C Fitzgerald: Professor of Cancer Prevention, MRC Cancer Unit, University of Cambridge, Cambridge, UK
Yirupaiahgari KS Viswanath: Professor of Surgery, James Cook University Hospital, South Tees Hospitals NHS Foundation Trust, Middlesbrough, UK
Jenni Burt: Senior Social Scientist, The Healthcare Improvement Studies Institute, University of Cambridge, Cambridge, UK

DOI: https://doi.org/10.3399/bjgpopen20X101001
Journal volume & issue: Vol. 4, no. 1

Abstract

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Background: Late stage diagnosis of oesophageal and gastric cancer is common, which limits treatment options and contributes to poor survival. Aim: To explore patients' understanding, experience and presentation of symptoms before a diagnosis of oesophageal or gastric cancer. Design & setting: Between May 2016 and October 2017, all patients newly diagnosed with oesophageal or gastric cancer were identified at weekly multidisciplinary team meetings at two large hospitals in England. A total of 321 patients were invited to participate in a survey and secondary care medical record review; 127 (40%) participants responded (102 patients had oesophageal cancer and 25 had gastric cancer). Of these, 26 participated in an additional face-to-face interview. Method: Survey and medical record data were analysed descriptively. Interviews were analysed using thematic analysis, informed by the Model of Pathways to Treatment. Results: Participants experienced multiple symptoms before diagnosis. The most common symptom associated with oesophageal cancer was dysphagia (n = 66, 65%); for gastric cancer, fatigue or tiredness (n = 20, 80%) was the most common symptom. Understanding of heartburn, reflux and indigestion, and associated symptoms differed between participants and often contrasted with clinical perspectives. Bodily changes attributed to personal and/or lifestyle factors were self-managed, with presentation to primary care prompted when symptoms persisted, worsened, or impacted daily life, or were notably severe or unusual. Participants rarely presented all symptoms at the initial consultation. Conclusion: The patient interval may be lengthened by misinterpretation of key terms, such as heartburn, or misattribution or non-recognition of important bodily changes. Clearly defined symptom awareness messages may encourage earlier help-seeking, while eliciting symptom experience and meanings in primary care consultations could prompt earlier referral and diagnosis.

Published in BJGP Open

ISSN: 2398-3795 (Online)
Publisher: Royal College of General Practitioners
Country of publisher: United Kingdom
LCC subjects: Medicine: Medicine (General)
Website: https://bjgpopen.org/

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