Aims
The human papillomavirus (HPV) is well recognised as a factor in developing oropharyngeal cancer (OPC). An evidence-based booklet, developed in the UK, for HPV-related oropharyngeal squamous cell carcinoma (OSCC) patients, was informed by interviews with health professionals, patients and their partners. It aimed to deliver information in everyday language, and to communicate information while minimising negative psychological impacts on the patient. This study explored the suitability of the booklet for use in Australia and New Zealand.
Methods
Participants were recruited through social media (Twitter, Facebook). 24 participants were interviewed via Zoom. All patients who participated (n=19) had been diagnosed and treated for HPV-related OSCC. Survivors’ support people also participated (n=5). Participants were shown the booklet and a Think Aloud method elicited real-time reactions to content. Responses were analysed for each section of the booklet and coded as either for or against content, with other responses thematically analysed using NVivo.
Results
All participants found the booklet useful and a large proportion wished the resource had been available previously. Some expressed the information was new to them. The majority of participants agreed the booklet would be best delivered by their specialist at point of diagnosis and would be a useful resource for friends and family. Most participants gave feedback on where the booklet could be improved in terms of comprehension and design. Overall, the booklet was well received, and participants found the content easy to understand. Most participants found the content helped reduce shame and stigma around the sexually transmitted nature of HPV.
Conclusions
Our research provides valuable insight into the target population’s views of this resource, revealing an evidence-based booklet for HPV-related OSCC patients and their partners is acceptable. Implementation may be feasible in routine clinical practice, specifically at time of diagnosis. Revising content of the booklet could facilitate communication between patients, families, and healthcare professionals.