title: Patient experience and anxiety during and after treatment for an HPV-related oropharyngeal cancer.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Johns Hopkins Bloomberg School of Public Health, Department of Epidemiology, 615 North Wolfe St, Baltimore, MD 21205, United States.
authors.forename: Gypsyamber
authors.initials: G
authors.lastname: D'Souza
authors.affiliation: Johns Hopkins Bloomberg School of Public Health, Department of Epidemiology, 615 North Wolfe St, Baltimore, MD 21205, United States.
authors.forename: Yuehan
authors.initials: Y
authors.lastname: Zhang
authors.affiliation: Greater Baltimore Medical Association, Department of Otolaryngology - Head and Neck Surgery, 6701 North Charles Street, Baltimore, MD 21204, United States.
authors.forename: Samantha
authors.initials: S
authors.lastname: Merritt
authors.affiliation: Greater Baltimore Medical Association, Department of Otolaryngology - Head and Neck Surgery, 6701 North Charles Street, Baltimore, MD 21204, United States.
authors.forename: Dorothy
authors.initials: D
authors.lastname: Gold
authors.affiliation: Johns Hopkins Bloomberg School of Public Health, Department of Epidemiology, 615 North Wolfe St, Baltimore, MD 21205, United States.
authors.forename: Hilary A
authors.initials: HA
authors.lastname: Robbins
authors.affiliation: Johns Hopkins Bloomberg School of Public Health, Department of Epidemiology, 615 North Wolfe St, Baltimore, MD 21205, United States.
authors.forename: Victoria
authors.initials: V
authors.lastname: Buckman
authors.affiliation: Johns Hopkins Bloomberg School of Public Health, Department of Epidemiology, 615 North Wolfe St, Baltimore, MD 21205, United States.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Gerber
authors.affiliation: Johns Hopkins University, Department of Otolaryngology - Head and Neck Surgery, 601 North Caroline St, Baltimore, MD 21287, United States.
authors.forename: David W
authors.initials: DW
authors.lastname: Eisele
authors.affiliation: Johns Hopkins University, Department of Otolaryngology - Head and Neck Surgery, 601 North Caroline St, Baltimore, MD 21287, United States; University of California San Francisco, Department of Otolaryngology - Head and Neck Surgery, 2380 Sutter St, San Francisco, CA 94115, United States.
authors.forename: Patrick
authors.initials: P
authors.lastname: Ha
authors.affiliation: Johns Hopkins University, Department of Otolaryngology - Head and Neck Surgery, 601 North Caroline St, Baltimore, MD 21287, United States.
authors.forename: Joseph
authors.initials: J
authors.lastname: Califano
authors.affiliation: Johns Hopkins University, Department of Otolaryngology - Head and Neck Surgery, 601 North Caroline St, Baltimore, MD 21287, United States. Electronic address: cfakhry@jhmi.edu.
authors.forename: Carole
authors.initials: C
authors.lastname: Fakhry
mesh_terms: D000368:Aged; D052685:Alphapapillomavirus / Q000302:isolation & purification*; D001007:Anxiety; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009959:Oropharyngeal Neoplasms / Q000523:psychology / Q000628:therapy* / Q000821:virology
keywords: Anxiety; HPV; OPC; Patient experience