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Understanding symptom appraisal and help-seeking in people with symptoms suggestive of pancreatic cancer: a qualitative study
  1. Katie Mills1,
  2. Linda Birt1,
  3. Jon D Emery2,
  4. Nicola Hall3,
  5. Jonathan Banks4,
  6. Margaret Johnson1,
  7. John Lancaster1,
  8. William Hamilton5,
  9. Greg P Rubin3,
  10. Fiona M Walter1
  1. 1 Department of Public Health and Primary Care, The Primary Care Unit, University of Cambridge, Cambridge, UK
  2. 2 Department of General Practice, Primary Care Cancer Research, University of Melbourne, Carlton, Victoria, Australia
  3. 3 Evaluation Research Development Unit, School of Medicine, Pharmacy & Health, Durham University, Bristol, UK
  4. 4 Centre for Academic Primary Care, School of Social and Community Medicine, University of Bristol, Bristol, UK
  5. 5 Department of Primary Care Diagnostics, College House, St Luke’s Campus, University of Exeter, Exeter, UK
  1. Correspondence to Dr Katie Mills; ko298{at}medschl.cam.ac.uk

Abstract

Objective Pancreatic cancer has poor survival rates due to non-specific symptoms leading to later diagnosis. Understanding how patients interpret their symptoms could inform approaches to earlier diagnosis. This study sought to explore symptom appraisal and help-seeking among patients referred to secondary care for symptoms suggestive of pancreatic cancer.

Design Qualitative analysis of semistructured in-depth interviews. Data were analysed iteratively and thematically, informed by the Model of Pathways to Treatment.

Participants and setting Pancreatic cancer occurs rarely in younger adults, therefore patients aged ≥40 years were recruited from nine hospitals after being referred to hospital with symptoms suggestive of pancreatic cancer; all were participants in a cohort study. Interviews were conducted soon after referral, and where possible, before diagnosis.

Results Twenty-six interviews were conducted (cancer n=13 (pancreas n=9, other intra-abdominal n=4), non-cancer conditions n=13; age range 48–84 years; 14 women). Time from first symptoms to first presentation to healthcare ranged from 1 day to 270 days, median 21 days. We identified three main themes. Initial symptom appraisal usually began with intermittent, non-specific symptoms such as tiredness or appetite changes, attributed to diet and lifestyle, existing gastrointestinal conditions or side effects of medication. Responses to initial symptom appraisal included changes in meal type or frequency, or self-medication. Symptom changes such as alterations in appetite and enjoyment of food or weight loss usually prompted further appraisal. Triggers to seek help included a change or worsening of symptoms, particularly pain, which was often a ‘tipping point’. Help-seeking was often encouraged by others. We found no differences in symptom appraisal and help-seeking between people diagnosed with cancer and those with other conditions.

Conclusions Greater public and healthcare professional awareness of the combinations of subtle and intermittent symptoms, and their evolving nature, is needed to prompt timelier help-seeking and investigation among people with symptoms of pancreatic cancer.

  • Pancreatic cancer
  • diagnosis
  • appraisal
  • help-seeking
  • symptoms

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors FMW, JDE, GPR and WH were responsible for study design, study conduct and management. KM, LB and NH collected the data. With support from JB, JDE, JL, MJ and FMW, KM analysed and interpreted the data. KM led the manuscript preparation. All authors contributed to the writing and completion of the paper and have approved the final the manuscript.

  • Funding This paper presents independent research funded by the National Institute for Health Research Programme Grants for Applied Research programme (RP-PG-0608-10045) and Pancreatic Cancer Action (registered charity 1137689). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. The funders of this study had no role in study design, data collection, analysis, and interpretation, or the writing of this research paper. FMW is supported by an NIHR Clinician Scientist award.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval The Cambridgeshire 3 Research Ethics Committee (10/H0306/50).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

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