Developing Human Papillomavirus Education Material for HPV-Positive Oropharyngeal Cancer Patients with an Interprofessional Health Care Team and Patient Representatives

ABSTRACT

Purpose: The incidence of human papillomavirus (HPV)-related head and neck cancer now exceeds the incidence of HPV-related cervical cancer in Canada. A study conducted at our institution identified that patients were not provided with sufficient information regarding HPV-positive oropharyngeal squamous cell carcinoma (HPV-OPSCC). It was also recognized that patients and their partner felt guilt and stigma about the HPV diagnosis, which had a negative impact on their intimacy. The aim of this project was to create an educational tool to address the concerns of patients and their families with HPV-OPSCC through collaboration of an interprofessional health care team and patient representatives. Methods: As part of the needs assessment, an environmental scan of patient education tools and a literature review on current evidence and management of HPV-OPSCC was conducted, resulting in pamphlets, articles and websites from various cancer centres in North America. Our institutional study was used to identify the patients’ needs including more information on the cause of HPV, consequences to their health, and future implications to the health of their partner(s). Three virtual meetings with the development team were conducted to identify the key messages and resources suggested to be included in the educational tool. The principles of lay language and clear design was adhered to in order to ensure the educational tool was acceptable and understandable for patients and their families. Feedback was elicited from stakeholders of the Head and Neck Site Group and the Patient and Family Education Committee. Results: Discussing an HPV diagnosis on top of cancer treatment options can be overwhelming for the patient on their first visit. Furthermore, family members may not be able to accompany the patient to their appointment due to current restrictions of the COVID-19 pandemic, thereby removing an aspect of support and opportunity for family members to ask questions. This educational tool provides patients and their loved ones answers to common questions regarding HPV-OPSCC, explains how this diagnosis affects their treatment outcomes, and helps patients and family navigate the available resources and supportive services within the cancer centre and on the internet. Challenges identified throughout the project include recruiting patient representatives who felt comfortable sharing their experience, as well as obtaining feedback from a large and diverse team of busy health care professionals. Conclusions: This tool will be in the form of a printed document and will be found on the cancer centre website. Not only was the development of this tool driven by patient need, but patient engagement was prioritized with two patient representatives on the development team to collaborate on the content and design of the education tool. An evaluation of the educational tool will be conducted and may consist of tracking the number of times the educational tool was accessed and administering a survey during the patient's next appointment to determine satisfaction.