Poster Presentation NSW State Cancer Conference 2023

Acceptability of an evidence-based booklet for HPV-related oropharyngeal squamous cell carcinoma patients and their partners (#193)

Ashleigh R Sharman 1 , Eliza M Ferguson 2 , Haryana Dhillon 2 , Paula Macleod 3 , Julie McCrossin 4 , Puma Sundaresan 1 5 , Jonathan R Clark 1 6 , Megan A Smith 7 , Rachael H Dodd 1 7 8
  1. Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, Australia
  2. Faculty of Science, The University of Sydney, Sydney, NSW, Australia
  3. Northern Sydney Cancer and Palliative Care Network, Northern Sydney Local Health District, Sydney, NSW, Australia
  4. Advocacy, Cancer Voices SA, Adelaide, SA, Australia
  5. Sydney West Radiation Oncology Network, Western Sydney Local Health District, Sydney, NSW, Australia
  6. Head and Neck Surgery, Chris O'Brien Lifehouse, Sydney, NSW, Australia
  7. The Daffodil Centre, The University of Sydney, Sydney, NSW, Australia
  8. Sydney Health Literacy Lab, The University of Sydney, Sydney, NSW, Australia

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 it 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.

Discussion

Our study demonstrates overwhelming support for this booklet as a much-needed resource for patients and their partners. Participants were supportive of the booklet’s content, most frequently recommending changes to some of the images and diagrams used. Where participants were happy with the amount of content, they often expressed the need to search for additional information online due to a lack of existing resources. This research provides valuable insight into the target population’s views of this resource. This study also has the potential to improve communication about sensitive topics such as HPV and potentially minimise negative psychosocial impact.

Conclusion

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.