Talking about human papillomavirus and cancer: protocol for a patient-centred study to develop scripted consultations.
BACKGROUND
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
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.


BACKGROUND
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.
North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK.
Maggie
M
Hendry
North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK.
Di
D
Pasterfield
Velindre Cancer Centre, Cardiff, UK.
Richard
R
Adams
Velindre Cancer Centre, Cardiff, UK.
Mererid
M
Evans
Royal College of Obstetricians and Gynaecologists, London, UK.
Alison
A
Fiander
South East Wales Trials Unit, Centre for Trials Research, Cardiff University, Cardiff, UK.
Michael
M
Robling
Usher Institute for Population Health Sciences and Informatics, The University of Edinburgh, Edinburgh, UK.
Christine
C
Campbell
The Pennine Acute Hospitals NHS Trust, Manchester UK.
Matthew
M
Makin
North Wales Cancer Treatment Centre, Betsi Cadwaladr University Health Board, Rhyl, UK.
Simon
S
Gollins
North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK.
Julia
J
Hiscock
North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK.
Sadia
S
Nafees
South East Wales Trials Unit, Centre for Trials Research, Cardiff University, Cardiff, UK.
Marie-Jet
MJ
Bekkers
Patient representative, Gloucester, UK.
Jan
J
Rose
Department of Sexual Health, Betsi Cadwaladr University Health Board, Wrexham, UK.
Olwen
O
Williams
Department of Pathology, University of Cambridge, Cambridge, UK.
Margaret
M
Stanley
North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK.
Clare
C
Wilkinson
D003142:Communication; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000209:etiology / Q000821:virology; D027383:Papillomaviridae; D030361:Papillomavirus Infections / Q000150:complications / Q000635:transmission / Q000821:virology; D010353:Patient Education as Topic / Q000379:methods*; D010817:Physician-Patient Relations; D012017:Referral and Consultation; D012107:Research Design; D012725:Sexual Behavior; D057545:Social Stigma
Ano-genital cancers; Human papillomavirus; Oropharyngeal cancers; Patient information; Sexually transmitted infections