Health literacy impacts self-management, quality of life and fear of recurrence in head and neck cancer survivors



Little is known about whether health literacy is associated with affects certain key outcomes in head and neck cancer (HNC) survivors. We investigated (i) the socio-demographic and clinical profile of health literacy and (ii) associations among between health literacy and self-management behaviours, health-related quality of life (HRQL) and fear of recurrence (FoR) in HNC survivors.


A population-based survey was conducted in Ireland. Health literacy was assessed using a validated single-item question. Socio-demographic, clinical and psychosocial outcome variables (FoR, self-management behaviours, HRQL) were collected. Multivariable linear regression was performed to estimate associations between health literacy and each psychosocial outcome.


Three hundred ninety-five (50%) individuals responded to the survey. Inadequate health literacy was evident among 47% of the sample. In adjusted models, HNC survivors with inadequate health literacy had significantly lower levels of self-management behaviours in the domains of health-directed behaviour, positive and active engagement in life, self-monitoring and insight, constructive attitudes and approaches and skills and technique acquisition. Inadequate health literacy was independently associated with lower functional well-being and HNC disease-specific HRQL. FoR was also significantly higher among those with inadequate health literacy.


HNC survivors with inadequate health literacy have lower levels of self-management behaviours, lower functional HRQL and increased FoR compared to those with adequate health literacy.

Implications for Cancer Survivors

Clinicians, healthcare providers and those developing interventions should consider how inadequate health literacy among HNC survivors might affect post-treatment outcomes when developing services and providing support for this group.

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  1. 1.

    Those below a certain income threshold are provided with a medical card which entitles them to access healthcare, including primary care, in the Irish public health system, free at the point of delivery


  1. 1.

    GLOBOCAN. GLOBOCAN 2018 - Estimated number of new cases in 2018, worldwide, both sexes, all ages [Internet]. 2018 [cited 2018 Nov 16]. Available from:

  2. 2.

    Pulte D, Brenner H. Changes in survival in head and neck cancers in the late 20th and early 21st century: a period analysis. Oncologist. 2010;15:994–1001.

    PubMed  PubMed Central  Article  Google Scholar 

  3. 3.

    Jakobsen KK, Grønhøj C, Jensen DH, Karnov KKS, Agander TK, Specht L, et al. Increasing incidence and survival of head and neck cancers in Denmark: a nationwide study from 1980 to 2014. Acta Oncologica Taylor & Francis Ltd. 2018;57:1143–51.

    Article  Google Scholar 

  4. 4.

    National Cancer Registry Ireland. Cancers of the head and neck [Internet]. 2014 p. 50. Available from:

  5. 5.

    Lv J-W, Huang X-D, Chen Y-P, Zhou G-Q, Tang L-L, Mao Y-P, et al. A national study of survival trends and conditional survival in nasopharyngeal carcinoma: analysis of the national population-based Surveillance Epidemiology and End Results registry. Cancer Res Treat. 2018;50:324–34.

    PubMed  Article  Google Scholar 

  6. 6.

    Petersen JF, Timmermans AJ, van Dijk BAC, Overbeek LIH, Smit LA, Hilgers FJM, et al. Trends in treatment, incidence and survival of hypopharynx cancer: a 20-year population-based study in the Netherlands. Eur Arch Otorhinolaryngol. 2018;275:181–9.

    PubMed  Article  Google Scholar 

  7. 7.

    O’Rorke MA, Ellison MV, Murray LJ, Moran M, James J, Anderson LA. Human papillomavirus related head and neck cancer survival: a systematic review and meta-analysis. Oral Oncol. 2012;48:1191–201.

    PubMed  Article  Google Scholar 

  8. 8.

    Prusinkiewicz MA, Gameiro SF, Ghasemi F, Dodge MJ, Zeng PYF, Maekebay H, et al. Survival-associated metabolic genes in human papillomavirus-positive head and neck cancers. Cancers. Basel: Mdpi. 2020;12:253.

    CAS  Google Scholar 

  9. 9.

    Rathod S, Livergant J, Klein J, Witterick I, Ringash J. A systematic review of quality of life in head and neck cancer treated with surgery with or without adjuvant treatment. Oral Oncol. 2015;51:888–900.

    PubMed  Article  Google Scholar 

  10. 10.

    Hung T-M, Lin C-R, Chi Y-C, Lin C-Y, Chen EY-C, Kang C-J, et al. Body image in head and neck cancer patients treated with radiotherapy: the impact of surgical procedures. Health Qual Life Outcomes. 2017;15:165.

    PubMed  PubMed Central  Article  Google Scholar 

  11. 11.

    Chen S-C, Yu P-J, Hong M-Y, Chen M-H, Chu P-Y, Chen Y-J, et al. Communication dysfunction, body image, and symptom severity in postoperative head and neck cancer patients: factors associated with the amount of speaking after treatment. Support Care Cancer. 2015;23:2375–82.

    PubMed  Article  Google Scholar 

  12. 12.

    Hutcheson KA, Nurgalieva Z, Zhao H, Gunn GB, Giordano SH, Bhayani MK, et al. Two-year prevalence of dysphagia and related outcomes in head and neck cancer survivors: an updated SEER-Medicare analysis. Head & Neck. 2019;41:479–87.

    Google Scholar 

  13. 13.

    Dunne S, Mooney O, Coffey L, Sharp L, Desmond D, Timon C, et al. Psychological variables associated with quality of life following primary treatment for head and neck cancer: a systematic review of the literature from 2004 to 2015. Psycho-Oncology. 2017;26:149–60.

    PubMed  Article  Google Scholar 

  14. 14.

    Smith JD, Shuman AG, Riba MB. Psychosocial issues in patients with head and neck cancer: an updated review with a focus on clinical interventions. Curr Psychiatry Rep. 2017;19:56.

    PubMed  Article  Google Scholar 

  15. 15.

    Davies NJ, Batehup L. Self-management support for cancer survivors: guidance for developing interventions. Self-Management Support for Cancer Survivors: Guidance for Developing Interventions. 2010.

  16. 16.

    Coffey L, Mooney O, Dunne S, Sharp L, Timmons A, Desmond D, et al. Cancer survivors’ perspectives on adjustment-focused self-management interventions: a qualitative meta-synthesis. J Cancer Surviv. 2016;10:1012–34.

    PubMed  Article  Google Scholar 

  17. 17.

    Dunne S, Mooney O, Coffey L, Sharp L, Timmons A, Desmond D, et al. Self-management strategies used by head and neck cancer survivors following completion of primary treatment: a directed content analysis. Psycho-Oncology [Internet]. 2017 [cited 2017 Sep 11]; Available from:

  18. 18.

    McCorkle R, Ercolano E, Lazenby M, Schulman-Green D, Schilling LS, Lorig K, et al. Self-management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin. 2011;61:50–62.

    PubMed  PubMed Central  Article  Google Scholar 

  19. 19.

    Dunne S, Coffey L, Sharp L, Desmond D, Cullen C, O’Connor J, et al. Investigating the impact of self-management behaviours on quality of life and fear of recurrence in head and neck cancer survivors: a population-based survey. Psycho-Oncology. 2019;28:742–9.

    PubMed  Article  Google Scholar 

  20. 20.

    Howell D, Harth T, Brown J, Bennett C, Boyko S. Self-management education interventions for patients with cancer: a systematic review. Supportive Care in Cancer; Heidelberg, vol. 25. Heidelberg, Netherlands, Heidelberg: Springer Nature B.V.; 2017. p. 1323–55.

    Google Scholar 

  21. 21.

    Cuthbert CA, Farragher JF, Hemmelgarn BR, Ding Q, McKinnon GP, Cheung WY. Self-management interventions for cancer survivors: a systematic review and evaluation of intervention content and theories. Psycho-Oncology. 2019;28:2119–40.

    PubMed  Article  Google Scholar 

  22. 22.

    Ringash J. Survivorship and quality of life in head and neck cancer. J Clin Oncol. 2015;33:3322–7.

    PubMed  Article  Google Scholar 

  23. 23.

    Chera BS, Eisbruch A, Murphy BA, Ridge JA, Gavin P, Reeve BB, et al. Recommended patient-reported core set of symptoms to measure in head and neck cancer treatment trials. J Natl Cancer Inst [Internet]. 2014 [cited 2018 Mar 21];106. Available from:

  24. 24.

    Savard J, Ivers H. The evolution of fear of cancer recurrence during the cancer care trajectory and its relationship with cancer characteristics. J Psychosom Res. 2013;74:354–60.

    PubMed  Article  Google Scholar 

  25. 25.

    Koch L, Jansen L, Brenner H, Arndt V. Fear of recurrence and disease progression in long-term (≥5 years) cancer survivors—a systematic review of quantitative studies. Psycho-Oncology. 2013;22:1–11.

    CAS  PubMed  Article  Google Scholar 

  26. 26.

    Van Liew JR, Christensen AJ, Howren MB, Hynds Karnell L, Funk GF. Fear of recurrence impacts health-related quality of life and continued tobacco use in head and neck cancer survivors. Health Psychol. 2014;33:373–81.

    PubMed  Article  Google Scholar 

  27. 27.

    Hall DL, Jimenez RB, Perez GK, Rabin J, Quain K, Yeh GY, et al. Fear of cancer recurrence: a model examination of physical symptoms, emotional distress, and health behavior change. J Oncol Pract Am Soc Clin Oncol. 2019;15:e787–97.

    Article  Google Scholar 

  28. 28.

    Public Health England UI of HE. Local action on health inequalities improving health literacy to reduce health inequalities [Internet]. Public Health England; 2015 p. 59. Available from:

  29. 29.

    Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155:97–107.

    PubMed  PubMed Central  Article  Google Scholar 

  30. 30.

    Cajita MI, Cajita TR, Han H-R. Health literacy and heart failure: a systematic review. J Cardiovasc Nurs. 2016;31:121–30.

    PubMed  PubMed Central  Article  Google Scholar 

  31. 31.

    Taylor DM, Fraser S, Dudley C, Oniscu GC, Tomson C, Ravanan R, et al. Health literacy and patient outcomes in chronic kidney disease: a systematic review. Nephrol Dial Transplant. 2018;33:1545–58.

    PubMed  Google Scholar 

  32. 32.

    Bailey SC, Brega AG, Crutchfield TM, Elasy T, Herr H, Kaphingst K, et al. Update on health literacy and diabetes. Diabetes Educ. 2014;40:581–604.

    PubMed  PubMed Central  Article  Google Scholar 

  33. 33.

    Mackey LM, Doody C, Werner EL, Fullen B. Self-management skills in chronic disease management: what role does health literacy have? Med Decis Mak. 2016;36:741–59.

    Article  Google Scholar 

  34. 34.

    Papadakos JK, Hasan SM, Barnsley J, Berta W, Fazelzad R, Papadakos CJ, et al. Health literacy and cancer self-management behaviors: a scoping review: health literacy and cancer self-management. Cancer. 2018;124:4202–10.

    PubMed  Article  Google Scholar 

  35. 35.

    Halverson JL, Martinez-Donate AP, Palta M, Leal T, Lubner S, Walsh MC, et al. Health literacy and health-related quality of life among a population-based sample of cancer patients. J Health Commun. 2015;20:1320–9.

    PubMed  PubMed Central  Article  Google Scholar 

  36. 36.

    Husson O, Mols F, Fransen MP, van de Poll-Franse LV, Ezendam NPM. Low subjective health literacy is associated with adverse health behaviors and worse health-related quality of life among colorectal cancer survivors: results from the profiles registry. Psychooncology. 2015;24:478–86.

    CAS  PubMed  Article  Google Scholar 

  37. 37.

    Koay K, Schofield P, Gough K, Buchbinder R, Rischin D, Ball D, et al. Suboptimal health literacy in patients with lung cancer or head and neck cancer. Support Care Cancer. 2013;21:2237–45.

    PubMed  Article  Google Scholar 

  38. 38.

    Nilsen ML, Moskovitz J, Lyu L, Harrison C, Randazza E, Peddada SD, et al. Health literacy: impact on quality of life in head and neck cancer survivors. Laryngoscope. 2019:1–6.

  39. 39.

    Megwalu UC. Health literacy in patients with head and neck cancer: an understudied issue. JAMA Otolaryngology–Head & Neck Surgery. 2017;143:645–6.

    Article  Google Scholar 

  40. 40.

    Bohn MJ, Babor TF, Kranzler HR. The alcohol use disorders identification test (AUDIT): validation of a screening instrument for use in medical settings. J Stud Alcohol. 1995;56:423–32.

    CAS  PubMed  Article  Google Scholar 

  41. 41.

    Chew LD, Griffin JM, Partin MR, Noorbaloochi S, Grill JP, Snyder A, et al. Validation of screening questions for limited health literacy in a large VA outpatient population. J Gen Intern Med. 2008;23:561–6.

    PubMed  PubMed Central  Article  Google Scholar 

  42. 42.

    Collins SA, Currie LM, Bakken S, Vawdrey DK, Stone PW. Health literacy screening instruments for eHealth applications: a systematic review. J Biomed Inform. 2012;45:598–607.

    PubMed  PubMed Central  Article  Google Scholar 

  43. 43.

    Sarkar U, Schillinger D, Lopez A, Sudore R. Validation of self-reported health literacy questions among diverse English and Spanish-speaking populations. J Gen Intern Med. New York: Springer. 2011;26:265–71.

    Article  Google Scholar 

  44. 44.

    List MA, D’Antonio LL, Cella DF, Siston A, Mumby P, Haraf D, et al. The performance status scale for head and neck cancer patients and the functional assessment of cancer therapy-head and neck scale. A study of utility and validity. Cancer. 1996;77:2294–301.

    CAS  PubMed  Article  Google Scholar 

  45. 45.

    Osborne RH, Elsworth GR, Whitfield K. The Health Education Impact Questionnaire (heiQ): an outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. Patient Educ Couns. 2007;66:192–201.

    PubMed  Article  Google Scholar 

  46. 46.

    Greenberg DB, Kornblith AB, Herndon JE, Zuckerman E, Schiffer CA, Weiss RB, et al. Quality of life for adult leukemia survivors treated on clinical trials of cancer and leukemia group B during the period 1971-1988: predictors for later psychologic distress. Cancer. 1997;80:1936–44.

    CAS  PubMed  Article  Google Scholar 

  47. 47.

    Thewes B, Butow P, Zachariae R, Christensen S, Simard S, Gotay C. Fear of cancer recurrence: a systematic literature review of self-report measures: a systematic review of fear of recurrence measures. Psycho-Oncology. 2012;21:571–87.

    PubMed  Article  Google Scholar 

  48. 48.

    StataCorp. Stata Statistical Software: Release 14. College Station, TX: StataCorp LP.; 2015.

    Google Scholar 

  49. 49.

    Zou G. A modified Poisson regression approach to prospective studies with binary data. Am J Epidemiol. 2004;159:702–6.

    PubMed  Article  Google Scholar 

  50. 50.

    Sørensen K, Pelikan JM, Röthlin F, Ganahl K, Slonska Z, Doyle G, et al. Health literacy in Europe: comparative results of the European health literacy survey (HLS-EU). Eur J Pub Health. 2015;25:1053–8.

    Article  Google Scholar 

  51. 51.

    Taib BG, Oakley J, Dailey Y, Hodge I, Wright P, du Plessis R, et al. Socioeconomic deprivation and the burden of head and neck cancer—regional variations of incidence and mortality in Merseyside and Cheshire, North West. England Clinical Otolaryngology. 2018;43:846–53.

    CAS  PubMed  Article  Google Scholar 

  52. 52.

    Bennett IM, Chen J, Soroui JS, White S. The contribution of health literacy to disparities in self-rated health status and preventive health behaviors in older adults. Ann Fam Med. 2009;7:204–11.

    PubMed  PubMed Central  Article  Google Scholar 

  53. 53.

    Beauchamp A, Buchbinder R, Dodson S, Batterham RW, Elsworth GR, McPhee C, et al. Distribution of health literacy strengths and weaknesses across socio-demographic groups: a cross-sectional survey using the Health Literacy Questionnaire (HLQ). BMC Public Health. 2015;15:678.

    PubMed  PubMed Central  Article  Google Scholar 

  54. 54.

    Oliffe JL, McCreary DR, Black N, Flannigan R, Goldenberg SL. Canadian men’s health literacy: a nationally representative study: health promotion practice [Internet]. 2019 [cited 2020 Feb 14]; Available from:

  55. 55.

    Allen S, Lowe D, Harris RV, Brown S, Rogers SN. Is social inequality related to different patient concerns in routine oral cancer follow-up clinics? Eur Arch Otorhinolaryngol. 2017;274:451–9.

    PubMed  Article  Google Scholar 

  56. 56.

    Wells M, Swartzman S, Lang H, Cunningham M, Taylor L, Thomson J, et al. Predictors of quality of life in head and neck cancer survivors up to 5 years after end of treatment: a cross-sectional survey. Support Care Cancer. 2016;24:2463–72.

    PubMed  Article  Google Scholar 

  57. 57.

    Rylands J, Lowe D, Rogers SN. Influence of deprivation on health-related quality of life of patients with cancer of the head and neck in Merseyside and Cheshire. Br J Oral Maxillofac Surg. 2016;54:669–76.

    CAS  PubMed  Article  Google Scholar 

  58. 58.

    Elsworth GR, Osborne RH. Percentile ranks and benchmark estimates of change for the Health Education Impact Questionnaire: normative data from an Australian sample. SAGE Open Med [Internet]. 2017 [cited 2020 Nov 12];5. Available from:

  59. 59.

    Institute of Medicine (US) Committee on Health Literacy. Health literacy: a prescription to end confusion [Internet]. Nielsen-Bohlman L, Panzer AM, Kindig DA, editors. Washington (DC): National Academies Press (US); 2004 [cited 2019 Aug 29]. Available from:

  60. 60.

    Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health. 2012;12:80.

    PubMed  PubMed Central  Article  Google Scholar 

  61. 61.

    Dodd RH, Waller J, Marlow LAV. Human papillomavirus and head and neck cancer: psychosocial impact in patients and knowledge of the link – a systematic review. Clin Oncol (R Coll Radiol). 2016;28:421–39.

    CAS  Article  Google Scholar 

  62. 62.

    Walters R, Leslie SJ, Polson R, Cusack T, Gorely T. Establishing the efficacy of interventions to improve health literacy and health behaviours: a systematic review. BMC Public Health. 2020;20:1040.

    PubMed  PubMed Central  Article  Google Scholar 

  63. 63.

    Visscher BB, Steunenberg B, Heijmans M, Hofstede JM, Devillé W, van der Heide I, et al. Evidence on the effectiveness of health literacy interventions in the EU: a systematic review. BMC Public Health. 2018;18:1414.

    PubMed  PubMed Central  Article  Google Scholar 

  64. 64.

    Trezona A, Rowlands G, Nutbeam D. Progress in implementing national policies and strategies for health literacy—what have we learned so far? IJERPH. 2018;15:1554.

    Article  Google Scholar 

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This research is partly funded by the Irish Cancer Society and the Health Research Board in Ireland. Health Research Board, Grant/Award Number: SRP13GAL, MRCG/2013/11.

Author information




Nicholas Clarke: Conceptualization, data analysis and interpretation, original manuscript preparation, writing, review and editing

Simon Dunne and Clare Cullen: Data curation and design, interpretation, manuscript review and editing

Jean O’Connor: Data curation, manuscript review and editing

Linda Sharp, Deirdre Desmond and Laura Coffey: Funding acquisition, data design, interpretation, manuscript review and editing

Pamela Gallagher: Funding acquisition, conceptualization, supervision, data design, manuscript review and editing

Conrad Timon: Funding acquisition, manuscript review and editing

Eleanor O’Sullivan: Manuscript review and editing

Corresponding author

Correspondence to Nicholas Clarke.

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There is no conflict of interest to report.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. We received formal ethical approval for the study from the following institutions in Ireland: Galway University Hospitals (Merlin Park University Hospital Clinical REC_C.A.1100); South/South West Hospital Group (UCC Clinical REC_ECM_4_(bbb)_03/06/14); St. James’s Hospital, Dublin (SJH/ J Cancer Surviv (2019) 13:43–55 53 AMNCH REC Reference: 2014/05/Chairman’s_Action); Royal Victoria Eye and Ear Hospital, Dublin (RVEEH REC_25/06/14).

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Informed consent was obtained from all individual participants included in the study.

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Clarke, N., Dunne, S., Coffey, L. et al. Health literacy impacts self-management, quality of life and fear of recurrence in head and neck cancer survivors. J Cancer Surviv (2021).

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  • Head and neck cancer
  • Health literacy
  • Health-related quality of life
  • Fear of recurrence
  • Psycho-oncology
  • Self-management