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.
Similar content being viewed by others
Notes
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.
References
Bjordal K, Ahlner-Elmqvist M, Hammerlid E, Boysen M, Evensen JF, Biorklund A, et al. A prospective study of quality of life in head and neck cancer patients. Part II: longitudinal data. Laryngoscope. 2001;111(8):1440–52.
Perry AR, Shaw MA, Cotton S. An evaluation of functional outcomes (speech, swallowing) in patients attending speech pathology after head and neck cancer treatment(s): results and analysis at 12 months post-intervention. J Laryngol Otol. 2003;117(5):368–81.
Gritz ER, Carmack CL, de Moor C, Coscarelli A, Schacherer CW, Meyers EG, et al. First year after head and neck cancer: quality of life. J Clin Oncol. 1999;17(1):352–60.
Meyer TJ, Mark MM. Effects of psychosocial interventions with adult cancer patients: a meta-analysis of randomized experiments. Health Psychol. 1995;14(2):101–8.
Newell SA, Sanson-Fisher RW, Savolainen NJ. Systematic review of psychological therapies for cancer patients: overview and recommendations for future research. J Natl Cancer Inst. 2002;94(8):558–84.
Semple CJ, McGowan B. Need for appropriate written information for patients, with particular reference to head and neck cancer. J Clin Nurs. 2002;11(5):585–93.
Ostroff J, Ross S, Steinglass P, Ronis-Tobin V, Singh B. Interest in and barriers to participation in multiple family groups among head and neck cancer survivors and their primary family caregivers. Fam Process. 2004;43(2):195–208.
Harris LL, Vogtsberger KN, Mattox DE. Group psychotherapy for head and neck cancer patients. Laryngoscope. 1985;95(5):585–7.
Edwards D. Head and neck cancer services: views of patients, their families and professionals. Br J Oral Maxillofac Surg. 1998;36(2):99–102.
van Wersch A, de Boer MF, van der Does E, de Jong P, Knegt P, Meeuwis CA, et al. Continuity of information in cancer care: evaluation of a logbook. Patient Educ Couns. 1997;31(3):223–36.
de Boer MF, Pruyn JF, van den Borne B, Knegt PP, Ryckman RM, Verwoerd CD. Rehabilitation outcomes of long-term survivors treated for head and neck cancer. Head Neck. 1995;17(6):503–15.
Cousineau TM, Lord SE, Seibring AR, Corsini EA, Viders JC, Lakhani SR. A multimedia psychosocial support program for couples receiving infertility treatment: a feasibility study. Fertil Steril. 2004;81(3):532–8.
Gerber BS, Brodsky IG, Lawless KA, Smolin LI, Arozullah AM, Smith EV, et al. Implementation and evaluation of a low-literacy diabetes education computer multimedia application. Diabetes Care. 2005;28(7):1574–80.
Goran MI, Reynolds K. Interactive multimedia for promoting physical activity (IMPACT) in children. Obes Res. 2005;13(4):762–71.
Reis J, McGinty B, Jones S. An e-learning caregiving program for prostate cancer patients and family members. J Med Syst. 2003;27(1):1–12.
Wang C, Gonzalez R, Milliron KJ, Strecher VJ, Merajver SD. Genetic counseling for BRCA1/2: a randomized controlled trial of two strategies to facilitate the education and counseling process. Am J Med Genet A. 2005;134(1):66–73.
Horowitz M, Wilner N, Alvarez W. Impact of event scale: a measure of subjective stress. Psychosom Med. 1979;41(3):209–18.
Sherman AC, Simonton S, Adams DC, Vural E, Hanna E. Coping with head and neck cancer during different phases of treatment. Head Neck. 2000;22(8):787–93.
Sherman AC, Simonton S, Adams DC, Vural E, Owens B, Hanna E. Assessing quality of life in patients with head and neck cancer: cross-validation of the European Organization for Research and Treatment of Cancer (EORTC) quality of life head and neck module (QLQ-H&N35). Arch Otolaryngol Head Neck Surg. 2000;126(4):459–67.
Walsh MC, Trentham-Dietz A, Schroepfer TA, Reding DJ, Campbell B, Foote ML, et al. Cancer information sources used by patients to inform and influence treatment decisions. J Health Commun. 2010;15(4):445–63.
Papadakos J, Bussiere-Cote S, Abdelmutti N, Catton P, Friedman AJ, Massey C et al. Informational needs of gynecologic cancer survivors. Gynecol Oncol. 2011 Oct 30. [Epub ahead of print]
Thewes B, Butow P, Girgis A, Pendlebury S. The psychosocial needs of breast cancer survivors; a qualitative study of the shared and unique needs of younger versus older survivors. Psychooncology. 2004;13(3):177–89.
Vivar CG, McQueen A. Informational and emotional needs of long-term survivors of breast cancer. J Adv Nurs. 2005;51(5):520–8.
Patel MX, Doku V, Tennakoon L. Challenges in recruitment of research participants. Adv Psychiatr Treat. 2003;9(3):229–38.
Manii D, Ammerman D. Men and cancer: a study of the needs of male cancer patients in treatment. J Psychosoc Oncol. 2008;26(2):87–102.
Tsuchiya M, Horn SA. An exploration of unmet information needs among breast cancer patients in Japan: a qualitative study. Eur J Cancer Care. 2009;18(2):149–55.
Petruson KM, Silander EM, Hammerlid EB. Effects of psychosocial intervention on quality of life in patients with head and neck cancer. Head Neck. 2003;25(7):576–84.
Hammerlid E, Persson LO, Sullivan M, Westin T. Quality-of-life effects of psychosocial intervention in patients with head and neck cancer. Otolaryngol Head Neck Surg. 1999;120(4):507–16.
Katz MR, Irish JC, Devins GM. Development and pilot testing of a psychoeducational intervention for oral cancer patients. Psychooncology. 2004;13(9):642–53.
Lea J, Lockwood G, Ringash J. Survey of computer use for health topics by patients with head and neck cancer. Head Neck. 2005;27(1):8–14.
Dumrongpakapakorn P, Hopkins K, Sherwood P, Zorn K, Donovan H. Computer-mediated patient education: opportunities and challenges for supporting women with ovarian cancer. Nurs Clin North Am. 2009;44(3):339–54.
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.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
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
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12553-012-0020-9