Sharing a diagnosis of HPV-related head and neck cancer: the emotions, the confusion, and what patients want to know.

Abstract

Oropharyngeal cancers are increasingly associated with human papillomavirus (HPV). Little is known about the experience of patients receiving this diagnosis. Semistructured interviews were conducted with ten survivors of HPV-related oropharyngeal cancer. The interviews were transcribed, and recurring themes were identified. Physicians were a trusted source of information regarding HPV. Framing the diagnosis in terms of prognosis resonated with patients. The uncertainty about transmission, latency, and communicability colored the dialogue about HPV. Despite some understanding of prevalence and transmission, patients worried about their partner's risk. Patients sought information about HPV on the Internet, but it was not easily navigable. Emotional reactions to the diagnosis remained mostly cancer-centric rather than HPV-centric. A patient-education handout was developed in response to patient questions. Additional educational resources explaining the facts about HPV in HNSCC in a consistent way including content of highest priority to patients may improve understanding of HPV.