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Informational Needs of Head and Neck Cancer Patients

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Abstract

The patient journey with head and neck cancer (HNC) is particularly challenging given the physical and functional impact of the cancer and treatment. The ability to perform activities of daily living can be severely compromised and have a profound impact on psychosocial well-being. These complex and long-lasting effects can affect patient quality of life for months to years and the literature shows that information for HNC patients is often insufficient. This observational cross-sectional study utilized survey methodology to investigate the informational needs of HNC patients and the preferred modalities for delivery. This was done to inform the development of resources for HNC patients. Four hundred fifty surveys were analyzed. The median age was 61 years and 58% of the cohort was born in Canada. Most were Caucasian (72%), Chinese being the next largest ethnicity (12%). A third had less than high school education and most had cancer of the oral cavity (28%) and were in long-term follow-up (41%). Comparison of the percentage of items to which a patient responded “very important” across the six domains shows variation of importance by domain (overall mixed effects regression model p < 0.0001). Additionally, each domain was compared to the medical domain and all had significantly lower mean scores (all p < 0.0001) with the medical domain scoring highest (mean score 64.6). The top preferred education modalities were teaching with a healthcare professional and pamphlets. This study highlights the type of information that HNC patients want and the format they wish to receive it in. The design provides a comprehensive way to consult with patients toward building education that responds to their specific needs.

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Authors and Affiliations

  1. Cancer Education Program, Princess Margaret Cancer Centre, 610 University Ave, Toronto, ON, M5G 2M9, Canada

    Janet Papadakos, Anandita Gokhale, Ali Damji, Aileen Trang & Nazek Abdelmutti

  2. ELLICSR: Health, Wellness & Cancer Survivorship Centre, Princess Margaret Cancer Centre, PMB ELLICSR, 585 University Avenue, Toronto, ON, M5G 2N2, Canada

    Janet Papadakos & Jolie Ringash

  3. Radiation Medicine Program, Princess Margaret Cancer Centre, 610 University Ave, Toronto, ON, M5G 2M9, Canada

    Maurene McQuestion

  4. Faculty of Medicine, University of Toronto, Toronto, ON, Canada

    Anandita Gokhale & Ali Damji

  5. Head and Neck Survivorship Program, Princess Margaret Cancer Centre, 610 University Ave, Toronto, ON, M5G 2M9, Canada

    Maurene McQuestion & Jolie Ringash

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  1. Janet Papadakos
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  2. Maurene McQuestion
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  6. Nazek Abdelmutti
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  7. Jolie Ringash
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Correspondence to Janet Papadakos.

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Papadakos, J., McQuestion, M., Gokhale, A. et al. Informational Needs of Head and Neck Cancer Patients. J Canc Educ 33, 847–856 (2018). https://doi.org/10.1007/s13187-017-1176-9

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