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BJGP Open. 2020 Jan 7. pii: bjgpopen20X101001. doi: 10.3399/bjgpopen20X101001. [Epub ahead of print]

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

Author information

1
Research Associate, The Healthcare Improvement Studies Institute, University of Cambridge, Cambridge, UK elka.humphrys@thisinstitute.cam.ac.uk.
2
Principal Researcher in Primary Care Cancer Research, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
3
Emeritus Professor of General Practice and Primary Care, Institute of Health and Society, Newcastle University, Newcastle-upon-Tyne, UK.
4
Herman Professor of Primary Care Cancer Research, Department of General Practice and Primary Health Care, Centre for Cancer Research, University of Melbourne, Melbourne, Australia.
5
Lay Member, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
6
Professor of Cancer Prevention, MRC Cancer Unit, University of Cambridge, Cambridge, UK.
7
Professor of Surgery, James Cook University Hospital, South Tees Hospitals NHS Foundation Trust, Middlesbrough, UK.
8
Senior Social Scientist, The Healthcare Improvement Studies Institute, University of Cambridge, Cambridge, UK.

Abstract

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.

KEYWORDS:

Primary health care; early diagnosis; esophageal neoplasms; gastrointestinal neoplasms; general practice; interviews; surveys and questionnaires

PMID:
31911419
DOI:
10.3399/bjgpopen20X101001
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