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Informational needs of head and neck cancer patients

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Abstract

Treatment for head and neck squamous cell carcinoma (HNSCC) can lead to considerable functional impairment. As a result, HNSCC patients experience significant decrements in quality of life, high levels of emotional distress, deteriorations in interpersonal relations, and increased social isolation. Studies suggest that HNSCC patients may have extensive informational and psychosocial needs that are not being adequately addressed. However, few programs have been developed to address the needs of HNSCC patients. Therefore, we conducted a pilot study of HNSCC patients to: 1) characterize patients’ informational needs; and 2) describe preferred formats and time points for receiving such information. The majority of participants desired additional information regarding treatment options, managing changes in swallowing and speaking, and staying healthy after treatment. Overall, patients with early-stage disease reported more informational needs compared to patients with advanced disease. Female patients were more likely to desire information about coping with emotional stress and anxiety than male patients. Younger patients (29–49 years) were more interested in receiving information about sexuality after cancer compared to their older (50+) counterparts. Although information was requested throughout the cancer trajectory, most patients preferred to receive such information at diagnosis or within 1–3 months post-treatment. The majority of patients reported having computer and Internet access, and they were most receptive to receiving information delivered via the Internet, from a DVD, or from pamphlets and booklets. The relatively high percentage of patients with computer and Internet access reflects a growing trend in the United States and supports the feasibility of disseminating health information to this patient population via Internet-based programs.

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Notes

  1. One-way analysis of variance is a statistical test that is used to compare whether the means of two or more groups differ from each other. This technique can be used only with continuous variables. For categorical variables, or non-numerical data, chi-square analyses were used to compare the frequency of observed responses across groups.

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Acknowledgments

This research was supported by National Institutes of Health grants P30CA006927, R41CA144100, and R01CA078084. We thank Denise Cothren, Colleen McKeown, Sara Worhach, and Kristen Sorice for their assistance on this project. We thank Dr. Eric Ross for providing biostatistics expertise and the FCCC Population Studies Facility for their services.

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Correspondence to Carolyn Y. Fang.

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Fang, C.Y., Longacre, M.L., Manne, S.L. et al. Informational needs of head and neck cancer patients. Health Technol. 2, 57–62 (2012). https://doi.org/10.1007/s12553-012-0020-9

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  • DOI: https://doi.org/10.1007/s12553-012-0020-9

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