Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study
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 & setti...
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doaj-54f0609c929048fd85eb5b0a24f2d54c2020-11-25T02:20:45ZengRoyal College of General PractitionersBJGP Open2398-37952020-01-014110.3399/bjgpopen20X101001Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods studyElka Humphrys0Fiona M Walter1Greg Rubin2Jon D Emery3Margaret Johnson4Anthony Richards5Rebecca C Fitzgerald6Yirupaiahgari KS Viswanath7Jenni Burt8Research Associate, The Healthcare Improvement Studies Institute, University of Cambridge, Cambridge, UKPrincipal Researcher in Primary Care Cancer Research, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UKEmeritus Professor of General Practice and Primary Care, Institute of Health and Society, Newcastle University, Newcastle-upon-Tyne, UKHerman Professor of Primary Care Cancer Research, Department of General Practice and Primary Health Care, Centre for Cancer Research, University of Melbourne, Melbourne, AustraliaLay Member, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UKLay Member, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UKProfessor of Cancer Prevention, MRC Cancer Unit, University of Cambridge, Cambridge, UKProfessor of Surgery, James Cook University Hospital, South Tees Hospitals NHS Foundation Trust, Middlesbrough, UKSenior Social Scientist, The Healthcare Improvement Studies Institute, University of Cambridge, Cambridge, UKBackground: 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.https://bjgpopen.org/content/4/1/bjgpopen20X101001primary health caregastrointestinal neoplasmsearly diagnosisinterviewssurveys and questionnairesesophageal neoplasmsgeneral practice |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Elka Humphrys Fiona M Walter Greg Rubin Jon D Emery Margaret Johnson Anthony Richards Rebecca C Fitzgerald Yirupaiahgari KS Viswanath Jenni Burt |
spellingShingle |
Elka Humphrys Fiona M Walter Greg Rubin Jon D Emery Margaret Johnson Anthony Richards Rebecca C Fitzgerald Yirupaiahgari KS Viswanath Jenni Burt Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study BJGP Open primary health care gastrointestinal neoplasms early diagnosis interviews surveys and questionnaires esophageal neoplasms general practice |
author_facet |
Elka Humphrys Fiona M Walter Greg Rubin Jon D Emery Margaret Johnson Anthony Richards Rebecca C Fitzgerald Yirupaiahgari KS Viswanath Jenni Burt |
author_sort |
Elka Humphrys |
title |
Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study |
title_short |
Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study |
title_full |
Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study |
title_fullStr |
Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study |
title_full_unstemmed |
Patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study |
title_sort |
patient symptom experience prior to a diagnosis of oesophageal or gastric cancer: a multi-methods study |
publisher |
Royal College of General Practitioners |
series |
BJGP Open |
issn |
2398-3795 |
publishDate |
2020-01-01 |
description |
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. |
topic |
primary health care gastrointestinal neoplasms early diagnosis interviews surveys and questionnaires esophageal neoplasms general practice |
url |
https://bjgpopen.org/content/4/1/bjgpopen20X101001 |
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