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Original research
Patient experience of gastrointestinal endoscopy: informing the development of the Newcastle ENDOPREM™
  1. Laura J Neilson1,2,
  2. Joanne Patterson2,3,
  3. Christian von Wagner4,
  4. Paul Hewitson5,
  5. Lesley M McGregor6,
  6. Linda Sharp7,
  7. Colin J Rees1,7
  1. 1 Department of Gastroenterology, South Tyneside District Hospital, South Tyneside and Sunderland NHS Foundation Trust, South Shields, UK
  2. 2 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK
  3. 3 Speech and Language Therapy Department, Sunderland Royal Hospital, Sunderland, UK
  4. 4 Research Department of Behavioural Science and Health, University College London, London, UK
  5. 5 Nuffield Department of Population Health, University of Oxford, Oxford, UK
  6. 6 Division of Psychology, University of Stirling, Stirling, UK
  7. 7 Population Health Sciences Institute & Newcastle University Centre for Cancer, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK
  1. Correspondence to Dr Laura J Neilson, Department of Gastroenterology, South Tyneside District Hospital, South Shields NE34 0PL, UK; l.neilson{at}nhs.net

Abstract

Background Measuring patient experience is important for evaluating the quality of patient care, identifying aspects requiring improvement and optimising patient outcomes. Patient Reported Experience Measures (PREMs) should, ideally, be patient derived, however no such PREMs for gastrointestinal (GI) endoscopy exist. This study explored the experiences of patients undergoing GI endoscopy and CT colonography (CTC) in order to: identify aspects of care important to them; determine whether the same themes are relevant across investigative modalities; develop the framework for a GI endoscopy PREM.

Methods Patients aged ≥18 years who had undergone oesophagogastroduodenoscopy (OGD), colonoscopy or CTC for symptoms or surveillance (but not within the national bowel cancer screening programme) in one hospital were invited to participate in semi-structured interviews. Recruitment continued until data saturation. Inductive thematic analysis was undertaken.

Results 35 patients were interviewed (15 OGD, 10 colonoscopy, 10 CTC). Most patients described their experience chronologically, and five ‘procedural stages’ were evident: before attending for the test; preparing for the test; at the hospital, before the test; during the test; after the test. Six themes were identified: anxiety; expectations; choice & control; communication & information; comfort; embarrassment & dignity. These were present for all three procedures but not all procedure stages. Some themes were inter-related (eg, expectations & anxiety; communication & anxiety).

Conclusion We identified six key themes encapsulating patient experience of GI procedures and these themes were evident for all procedures and across multiple procedure stages. These findings will be used to inform the development of the Newcastle ENDOPREM™.

  • endoscopy
  • CT
  • colonoscopy
  • gastroscopy

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Footnotes

  • LS and CJR are joint senior authors.

  • Correction notice This article has been corrected since it published Online First. The trademark to ENDOPREM has been added.

  • Contributors CR secured funding. CR, LJN and LS conceived the study and reviewed the literature. CR, LS and JP oversaw data collection, analysis and interpretation. LJN undertook the semi-structured interviews and thematic analysis and drafted the paper. LMM double coded a proportion of the interview transcripts. CR, LJN, LS, JP, CVW, PH and LMM contributed to study design, critically reviewed manuscript drafts and approved the final article for submission. CR and LJN are guarantors for the data.

  • Funding This study was an investigator led study funded by Aquilant Endoscopy and adopted onto the National Institute for Health Research Portfolio (UKCRN ID 18749)

  • Disclaimer The funder had no role in study design, data collection, data analysis, data interpretation, or writing of this manuscript. The corresponding author had full access to all the data in the study and had final responsibility for the decision to submit.

  • Competing interests CR has received grant funding from ARC medical, Norgine and Olympus medical. He was an expert witness for ARC medical.

  • Patient consent for publication Not required.

  • Ethics approval Ethical approval was obtained through the NRES Committee London-Stanmore (IRAS ID: 148469, National Institute for Health Research UKCRN ID 18749).

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

  • Data availability statement Due to the in depth nature of the qualitative interviews, data are not available.