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Talking about human papillomavirus and cancer: protocol for a patient-centred study to develop scripted consultations
  1. Maggie Hendry1,
  2. Di Pasterfield1,
  3. Richard Adams2,
  4. Mererid Evans2,
  5. Alison Fiander3,
  6. Michael Robling4,
  7. Christine Campbell5,
  8. Matthew Makin6,
  9. Simon Gollins7,
  10. Julia Hiscock1,
  11. Sadia Nafees1,
  12. Marie-Jet Bekkers4,
  13. Jan Rose8,
  14. Olwen Williams9,
  15. Margaret Stanley10,
  16. Clare Wilkinson1
  1. 1North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK
  2. 2Velindre Cancer Centre, Cardiff, UK
  3. 3Royal College of Obstetricians and Gynaecologists, London, UK
  4. 4South East Wales Trials Unit, Centre for Trials Research, Cardiff University, Cardiff, UK
  5. 5Usher Institute for Population Health Sciences and Informatics, The University of Edinburgh, Edinburgh, UK
  6. 6The Pennine Acute Hospitals NHS Trust, Manchester UK
  7. 7North Wales Cancer Treatment Centre, Betsi Cadwaladr University Health Board, Rhyl, UK
  8. 8Patient representative, Gloucester, UK
  9. 9Department of Sexual Health, Betsi Cadwaladr University Health Board, Wrexham, UK
  10. 10Department of Pathology, University of Cambridge, Cambridge, UK
  1. Correspondence to Maggie Hendry; m.hendry{at}bangor.ac.uk

Abstract

Introduction Persistent infection with sexually transmitted, high-risk human papillomavirus (HPV) types is the cause of all cervical cancers and some anogenital and oropharyngeal cancers. HPV is an extremely common asymptomatic infection but little known and poorly understood by the public. Patients with HPV-related cancers have new and challenging information needs due to the complex natural history of HPV and the stigma of sexual transmission. They may ask questions that are outside the remit of the traditional cancer consultation, and there is a lack of guidance on how to counsel them. This study aims to fulfil that need by developing and testing cancer site-specific scripted consultations.

Methods and analysis A synthesis of findings generated from previous work, a systematic review of information-based interventions for patients with HPV-related cancers, and interviews with cancer clinicians will provide the evidence base underpinning provisional messages. These will be explored in three phases of face-to-face interviews with 75–90 purposively selected patients recruited in cancer clinics to: (1) select and prioritise the most salient messages, (2) phrase the messages appropriately in plain English and, (3) test their acceptability and usefulness. Phases 1 and 2 will draw on card-sorting methods used in website design. In phase three, we will create cancer site-specific versions of the script and test them using cognitive interviewing techniques.

Ethics and dissemination The study has received ethical approval. Findings will be published in a peer-reviewed journal. The final product will be cancer-specific scripted consultations, most likely in the form of a two-sided information sheet with the most important messages to be conveyed in a consultation on one side, and frequently asked questions for later reading on the reverse. However, they will also be appropriate and readily adaptable to web-based uses.

  • Human papillomavirus
  • Patient information
  • Ano-genital cancers
  • Oropharyngeal cancers
  • Sexually transmitted infections

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/

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