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  • Talking about human papillomavirus and cancer: development of consultation guides through lay and professional stakeholder coproduction using qualitative, quantitative and secondary data

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Oncology
Research
Talking about human papillomavirus and cancer: development of consultation guides through lay and professional stakeholder coproduction using qualitative, quantitative and secondary data
  1. Maggie Hendry1,
  2. Diana Pasterfield1,
  3. Simon Gollins2,
  4. Richard Adams3,
  5. Mererid Evans3,
  6. Alison Fiander4,
  7. Michael Robling5,
  8. Christine Campbell6,
  9. Marie-Jet Bekkers5,
  10. Julia Hiscock1,
  11. Sadia Nafees1,
  12. Janice Rose7,
  13. Margaret Stanley8,
  14. Olwen Williams9,
  15. Matthew Makin10,
  16. Clare Wilkinson1
  1. 1 North Wales Centre for Primary Care Research, Bangor University, Bangor, UK
  2. 2 North Wales Cancer Treatment Centre, Betsi Cadwaladr University Health Board, Rhyl, UK
  3. 3 Department of Clinical Oncology, Velindre Cancer Centre, Cardiff, UK
  4. 4 Leading Safe Choices Programme, Royal College of Obstetricians and Gynaecologists, London, UK
  5. 5 South East Wales Trials Unit, Cardiff University, Cardiff, UK
  6. 6 Department of Pathology, Usher Institute for Population Health Sciences and Informatics, The University of Edinburgh, Edinburgh, UK
  7. 7 PPI Primary Care Clinical Studies Group, National Cancer Research Institute, Gloucester, UK
  8. 8 Department of Pathology, University of Cambridge, Cambridge, UK
  9. 9 Department of Genitourinary Medicine, Betsi Cadwaladr University Health Board, Wrexham, UK
  10. 10 Office of the Medical Director, The Pennine Acute Hospitals NHS Trust, Manchester, UK
  1. Correspondence to Ms. Maggie Hendry; m.hendry{at}bangor.ac.uk

Abstract

Background High-risk human papillomaviruses (HPVs) cause all cervical cancer and the majority of vulvar, vaginal, anal, penile and oropharyngeal cancers. Although HPV is the most common sexually transmitted infection, public awareness of this is poor. In addition, many clinicians lack adequate knowledge or confidence to discuss sexual transmission and related sensitive issues. Complex science needs to be communicated in a clear, digestible, honest and salient way. Therefore, the aim of this study was to coproduce with patients who have cancer appropriate resources to guide these highly sensitive and difficult consultations.

Methods A matrix of evidence developed from a variety of sources, including a systematic review and telephone interviews with clinicians, supported the production of a draft list of approximately 100 potential educational messages. These were refined in face-to-face patient interviews using card-sorting techniques, and tested in cognitive debrief interviews to produce a ‘fast and frugal’ knowledge tool.

Results We developed three versions of a consultation guide, each comprising a clinician guidance sheet and patient information leaflet for gynaecological (cervical, vaginal, vulvar), anal or oropharyngeal cancers. That cancer could be caused by a sexually transmitted virus acquired many years previously was surprising to many and shocking to a few patients. However, they found the information clear, helpful and reassuring. Clinicians acknowledged a lack of confidence in explaining HPV, welcomed the clinician guidance sheets and considered printed information for patients particularly useful.

Conclusion Because of the ‘shock factor’, clinicians will need to approach the discussion of HPV with sensitivity and take individual needs and preferences into account, but we provide a novel, rigorously developed and tested resource which should have broad applicability in the UK National Health Service and other health systems.

  • cervical cancer
  • vaginal cancer

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2016-015413

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    Footnotes

    • Contributors CW is Chief Investigator and conceived the original idea for the research. MH, DP, RA, ME, AF, MR, CC and MM were co-applicants and together with CW designed the study. JH and SN developed participant recruitment materials and sought ethical and R&D approval. All authors regularly attended meetings of the study advisory group and contributed to further development of the protocol. JR represented the patient perspective; OW advised on sexual health; MS advised on virology/pathology of HPV. RA, ME, AF and SG were involved in patient recruitment. MH and DP conducted the systematic review; JH and MH conducted telephone interviews with clinicians; MH and M-JB conducted face-to-face patient interviews. MH and DP drafted the paper; all authors read, commented and were involved in subsequent redrafts and all have read and approved the final version.

    • Competing interests None declared.

    • Patient consent Detail has been removed from this case description/these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.

    • Ethics approval NHS Health Research Authority, Wales REC 3.

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

    • Data sharing statement We have attempted to make all relevant data available, either within this manuscript or in the supplementary files; however, we welcome further inquiries to the corresponding author.

    • Correction notice This paper has been amended since it was published Online First. Owing to a scripting error, some of the publisher names in the references were replaced with 'BMJ Publishing Group'. This only affected the full text version, not the PDF. We have since corrected theseerrors and the correct publishers have been inserted into the references.