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

Authors

  • Shrujal S. Baxi MD, MPH,

    Corresponding author
    1. Head and Neck Oncology Service, Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, New York
    • Head and Neck Oncology Service, Department of Medicine, Memorial Sloan-Kettering Cancer Center (MSKCC), New York, NY. E-mail: baxis@mskcc.org

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  • Andrew G. Shuman MD,

    1. Head and Neck Service, Department of Surgery, Memorial Sloan-Kettering Cancer Center, New York, New York
    2. Department of Public Health, Weil Medical College of Cornell University, New York, New York
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  • Geoffrey W. Corner BS,

    1. Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York
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  • Elyse Shuk MA,

    1. Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York
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  • Eric J. Sherman MD,

    1. Head and Neck Oncology Service, Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, New York
    2. Department of Medicine, Weil Medical College of Cornell University, New York, New York
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  • Elena B. Elkin PhD,

    1. Department of Public Health, Weil Medical College of Cornell University, New York, New York
    2. Department of Epidemiology and Biostatistics, Memorial Sloan-Kettering Cancer Center, New York, New York
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  • Jennifer L. Hay PhD,

    1. Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York
    2. Department of Psychiatry, Weil Medical College of Cornell University, New York, New York
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  • David G. Pfister MD

    1. Head and Neck Oncology Service, Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, New York
    2. Department of Medicine, Weil Medical College of Cornell University, New York, New York
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  • The authors have no financial interests, disclosures, conflicts of interest, or funding sources regarding the content of this original manuscript.

    The results of this study were presented as an abstract at the National Cancer Institute's 2012 Biennial Cancer Survivorship Research Conference on June 15, 2012, and as an oral presentation at the 8th International Meeting of the American Head and Neck Society in Toronto, Canada, on July 24, 2012.

Abstract

Background

Oropharyngeal cancers are increasingly associated with human papillomavirus (HPV). Little is known about the experience of patients receiving this diagnosis.

Methods

Semistructured interviews were conducted with ten survivors of HPV-related oropharyngeal cancer. The interviews were transcribed, and recurring themes were identified.

Results

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.

Conclusions

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. © 2012 Wiley Periodicals, Inc. Head Neck, 35: 1534–1541, 2013

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