Patient experience and anxiety during and after treatment for an HPV-related oropharyngeal cancer

Abstract

Objectives: Diagnosis with an HPV-related oropharyngeal cancer includes unique social issues. However, it is unknown how common these psychosocial issues are for patients and whether they continue after treatment.

Materials and methods: Patients with pathologically confirmed HPV-positive oropharyngeal cancer (HPV-OPC, n=48) were recruited from two medical centers. Participants completed a computer assisted self interview that explored their psychosocial experiences during and after treatment. We examined responses overall and by age.

Results: The majority of participants with confirmed HPV-OPC, reported being told that HPV could have (90%) or did cause (77%) their malignancy, but only 52% believed that HPV was the main cause of their OPC. Participants over 65years were less likely than younger participants to report that their doctors told them their tumor was HPV-positive (50% vs 84%, p=0.03). Anxiety that their tumor was HPV-related was a major issue among participants when first diagnosed (93%). However, only 17% still reported anxiety after treatment was complete. While many patients reported that providers discussed the emotional effects of diagnosis and treatment adequately (58%), almost half reported discussing these emotional effects inadequately (24%), or not at all (18%). Further, 18% reported that their families still wondered about some questions that they had never asked.

Conclusion: After treatment, some HPV-OPC patients remain concerned about HPV and have unanswered questions about HPV. Older patients had lower awareness of the role of HPV in their cancer.

Keywords: Anxiety; HPV; OPC; Patient experience.

Figure 1

Participant reflection on how much the emotional effects of HPV-OPC had been discussed with them, among 39 HPV-OPC cases who had finished therapy.

Figure 2

Patient perspectives on resources that they found “very much” helpful and “a little or somewhat” helpful during diagnosis and treatment (see Appendix 1 for a copy of the survey).^ Respondents reported how helpful each of the following were: conversations with radiation oncologist (Rad Onc), conversations with nurses (Nurse), conversations with head and neck surgeon (HN Surgeon), conversations with medical oncologist (Med Onc), printed information provided by the clinical team (Printed Info), information from the internet (Internet), conversations with other patients (Other Patients), and support groups (Support Group). ^ This excludes 3 patients who said the question was “not applicable”