Background Limited literacy and health literacy are associated with lack of cancer screening and later stage cancer diagnoses.
Objective To systematically review the literature for definitions of literacy and health literacy as related to patient access, use, and comprehension of cancer prevention and treatment education.
Methods Original research articles written from 1992 to 2006 inclusive with the terms health literacy and/or literacy in the title, abstract or key words and explicitly linked to cancer information were found by searching MEDLINE, PsycINFO, CSA Sociological Abstracts, Social Sciences Citation Index, and Cumulative Index to Nursing and Allied Health Literature (CINAHL).
Results A final sample of 78 studies was included in this review. Fortyfive articles mentioned literacy, seven were on health literacy, and 26 discussed both literacy and health literacy. Only 15 articles (19.2 per cent) defined literacy and/or health literacy.
Conclusion This systematic review indicates that definitions of literacy and health literacy are not being used consistently in the cancer education literature. Best practice definitions of literacy and health literacy are important, especially when screening individuals for their understanding of cancer prevention and treatment information.
Public Health Agency of Canada.What Determines Health? Online. Available: http://www.phac-aspc.gc.ca/ph-sp/phdd/determinants/index.html (accessed 15 December 2006).
2.
Ratzan SCHealth literacy: Communication for the public good. Health Promotion International, 2001: 16: 207-214.
3.
Statistics Canada.Reading the Future: A Portrait of Literacy in Canada - Backgrounder. Ottawa: Statistics Canada, 1997. Online. Available: http://www.hrsdc.gc.ca/en/hip/lld/nls/Surveys/ialscrbk.shtml (accessed 5 January 2007).
4.
Rootman I.Health promotion and literacy: Implications for nursing. Canadian Journal of Nursing Research, 2004: 36: 13-21.
5.
Nutbeam D.Health promotion glossary. Health Promotion International , 1998: 13: 349-364.
6.
Baker DW, Gazmararian JA, Williams MV, et al. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. American Journal of Public Health, 2002: 92: 1278-1283.
7.
Wolf MS, Gazmararian JA, Baker DWHealth literacy and functional health status among older adults. Archives of Internal Medicine, 2005: 165: 1946-1952.
8.
Lindau ST, Basu A., Leitsch SAHealth literacy as a predictor of follow-up after an abnormal Pap smear: A prospective study. Journal of General Internal Medicine , 2006: 21: 829-834.
9.
Bennett CL, Ferreira MR, Davis TC, et al. Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. Journal of Clinical Oncology, 1998: 16: 3101-3104.
10.
US Department of Health and Human Services.Healthy People2010.2nd edition. With: Understanding and Improving Health and Objectives for Improving Health. 2 vols. Washington, DC: US Government Printing Office, November 2000.
11.
Institute of Medicine. Health Literacy: A Prescription to End Confusion. Washington, DC : The National Academies, 2004.
12.
National Institute for Literacy - Facts and Statistics.International Adult Literacy Survey (IALS). Online. Available: http://www.nifl.gov/nifl/facts/IALS.html (accessed 5 January 2007).
13.
Statistics Canada and Organization for Economic Cooperation and Development (OECD).Adult Literacy and Lifeskills Survey (ALL). Paris and Ottawa: OECD and Minister of Industry, 2003.
14.
Kelly PA, Haidet P.Physician overestimation of patient literacy: A potential source of health care disparities. Patient Education and Counseling , 2006: 66: 119-122.
15.
Rogers ES, Wallace LS, Weiss BDMisperceptions of medical understanding in low-literacy patients: Implications for cancer prevention. Cancer Control, 2006 : 13: 225-229.
16.
Safeer RS, Keenan J.Health literacy: The gap between physicians and patients. American Family Physician, 2005: 72: 463-468.
17.
Wolf MS, Bennett CL, Davis TC, Marin E., Arnold C.A qualitative study of literacy and patient response to HIV medication adherence questionnaires. Journal of Health Communication , 2005: 10: 509-517.
18.
Houts PS, Doak CC, Doak LG, Loscalzo MJThe role of pictures in improving health communication: A review of research on attention, comprehension, recall, and adherence. Patient Education and Counseling, 2006: 61: 173-190.
19.
Friedman DB, Hoffman-Goetz L.Cancer coverage in North American publications targeting seniors. Journal of Cancer Education, 2003: 18: 43-47.
20.
Friedman DB, Hoffman-Goetz L., Arocha JFHealth literacy and the World Wide Web: Comparing the readability of leading incident cancers on the Internet. Medical Informatics and the Internet in Medicine, 2006: 31: 67-87.
21.
Guidry JJ, Fagan P., Walker V.Cultural sensitivity and readability of breast and prostate printed cancer education materials targeting African Americans. Journal of the National Medical Association, 1998: 90: 165-169.
22.
Kaphingst KA , Zanfini CJ, Emmons KMAccessibility of web sites containing colorectal cancer information to adults with limited literacy (United States). Cancer Causes and Control, 2006: 17: 147-151.
23.
Singh J.Reading grade level and readability of printed cancer education materials . Oncology Nursing Forum, 2003: 30: 867-870.
24.
Friedman DB , Hoffman-Goetz L.A systematic review of readability and comprehension instruments used for print and web-based cancer information . Health Education & Behavior, 2006: 33: 352-373.
25.
Davis TC, Michielutte R., Askov EN, Williams MV, Weiss BDPractical assessment of adult literacy in healthcare. Health Education & Behavior, 1998: 25: 613-624.
26.
Ley P., Florio T.The use of readability formulas in health care. Psychology, Health, and Medicine, 1996: 1: 7-28.
27.
Rao DN, Desai PBRisk assessment of tobacco, alcohol and diet in cancers of base tongue and oral tongue-a case control study. Indian Journal of Cancer , 1998: 35: 65-72.
28.
Gerlach KK, Marino C., Hoffman-Goetz L.Cancer coverage in women's magazines: What information are women receiving ? Journal of Cancer Education, 1997: 12: 240-244.
29.
Statistics Canada.Survey of Literacy Skills Used in Daily Activities (1988) - Custom Tabulations. Online. Available: http://www.statcan.ca/english/IPS/Data/89C0015.htm (accessed 1 April 2005).
30.
Health Canada.How Does Literacy Affect the Health of Canadians. Ottawa, Canada: Minister of Public Works and Government Services Canada , 1998. Online. Available: http://www.phac-aspc.gc.ca/ph-sp/phdd/literacy/literacy.html (accessed 5 January 2007).
31.
Centre for Literacy of Québec.Definition of Literacy. Online. Available: http://www.centreforliteracy.qc.ca/def.htm (accessed 5 January 2007).
32.
National Literacy Act of 1991. Public Law 102-73 Enacted by the United States on July25,1991.Online.Available: http://www.nifl.gov/public-law.html (accessed 5 January 2007).
33.
Kirsch IS, Jungblut A., Jenkins L., Kolstad A.Adult Literacy in America: A First Look at the Result of the National Adult Literacy Survey. Washington, DC: National Center for Education Statistics, US Department of Education, 1993.
34.
Mara J.Clear & Simple: Developing Effective Print Materials for Low-literate Readers (NIH Pub. No. 95-3594). Washington, DC: National Institutes of Health, National Cancer Institute, 1994.
35.
Aziz Z., Sana S., Akram M., Saeed A.Socioeconomic status and breast cancer survival in Pakistani women . Journal of the Pakistan Medical Association, 2004: 54: 448-453.
36.
Tziraki C., Sutton S., Eisner E., Saunders LSNational Cancer Institute's ethnic and low literacy nutrition education . project Journal of Nutrition Education, 1994: 26: 101-106.
37.
Zanchetta MSUnderstanding functional health literacy in experiences with prostate cancer: Older men as consumers of health information . Online Brazilian Journal of Nursing, 2004 : 3: Epub.
38.
Donelle L., Hoffman-Goetz L., Clarke JNPortrayal of genetic risk for breast cancer in ethnic and non-ethnic newspapers . Women & Health, 2004: 40: 93-111.
39.
Hahn EA, Cella D., Dobrez D., Shiomoto G., Marcus E., Taylor SGThe talking touchscreen : A new approach to outcomes assessment in low literacy . Psycho-oncology, 2004: 13: 86-95.
40.
American Medical Association (Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs).Health literacy: Report of the Council on Scientific Affairs. Journal of the American Medical Association, 1999: 281: 552-557.
41.
Nutbeam D.Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 2000: 15: 259-267.
42.
Hoffman-Goetz L., Friedman DBDisparities in the coverage of cancer information in ethnic minority and mainstream print media. Ethnicity & Disease, 2005: 15: 332-340.
43.
Hoffman-Goetz L., MacDonald M.Cancer coverage in mass-circulating Canadian women's magazines. Canadian Journal of Public Health , 1999: 90: 55-59.
44.
Friedman DB , Hoffman-Goetz L.An assessment of older adults' comprehension of cancer information on the Internet: Is readability a key factor? Journal of Health Communication, 2007: 12(5): 423-437.
45.
Gerlach KK, Marino C., Weed DL, Hoffman-Goetz L.Lack of colon cancer coverage in seven women's magazines. Women & Health, 1997: 26: 57-68.
46.
Arocha JF, Wang D., Patel VLIdentifying reasoning strategies in medical decision making: A methodological guide. Journal of Biomedical Informatics, 2005: 38: 154-171.
47.
Meade CD, McKinney P., Barnas GPEducating patients with limited literacy skills: The effectiveness of printed and videotaped materials about colon cancer. American Journal of Public Health, 1994: 84: 119-121.
48.
Meade CD, Diekmann J., Thornhill DGReadability of American Cancer Society patient education. Oncology Nursing Forum, 1992: 19: 51-55.
49.
Dhamija S.Factors associated with awareness and knowledge of cervical cancer in a community - Implication for health education programs in developing countries . Journal of the Royal Society of Health, 1993: 113: 184-186.
50.
Curry RH, Moen JB, Morris SJ, Scheivelhud L.Community-directed cancer screening program. Cancer Practice , 1994: 2: 256-263.
51.
List MA, Lacey L., Hopkins E., Burton D.The involvement of low literate elderly women in the development and distribution of cancer screening materials. Family & Community Health , 1994: 17: 42-55.
52.
Cooley ME, Moriarty H., Berger MS, Selm-Orr D., Coyle B., Short T.Patient literacy and the readability of written cancer educational materials . Oncology Nursing Forum, 1995: 22: 1345-1351.
53.
Davis TC, Arnold C., Berkel HJ, Nandy I., Jackson RH, Glass J.Knowledge and attitude on screening mammography among low-literate, low-income women. Cancer, 1996: 78: 1912-1920.
54.
Foltz A., Sullivan J.Reading level, learning presentation preference, and desire for information among cancer patients. Journal of Cancer Education, 1996: 11: 32-38.
55.
Glazer HR, Kirk LM, Bosler FEPatient education pamphlets about prevention, detection, and treatment of breast cancer for low literacy women. Patient Education and Counseling, 1996: 27: 185-189.
56.
Paskett ED, Tatum C., Wilson A., Dignan M., Velez R.Use of a photoessay to teach low-income African American women about mammography . Journal of Cancer Education, 1996: 11: 216-220.
57.
Cella D., Hernandez L., Bonomi AE, et al. Spanish language translation and initial validation of the functional assessment of cancer therapy quality-of-life instrument. Medical Care, 1998: 36: 1407-1418.
58.
Davis TC, Berkel HJ, Arnold CL, Nandy I., Jackson RH, Murphy PWIntervention to increase mammography utilization in a public hospital . Journal of General Internal Medicine, 1998 : 13: 230-233.
59.
Davis TC, Holcombe RF, Berkel HJ, Pramanik S., Divers SGInformed consent for clinical trials: A comparative study of standard versus simplified forms. Journal of the National Cancer Institute , 1998: 90: 668-674.
60.
Gajalakshmi CK , Swaminathan R., Shanta V.A study on pancreatic cancer in Chennai (Madras), India. Cancer Letters, 1998: 122: 221-226.
61.
Knight SJ, Chmiel JS, Kuzel T., Sharp L.,Albers M., Fine R.Quality of life in metastatic prostate cancer among men of lower socioeconomic status: Feasibility and criterion related validity of 3 measures. Journal of Urology, 1998: 160: 1765-1769.
62.
Macario E., Emmons KM, Sorenson G., Hunt MK, Rudd REFactors influencing nutrition education for patients with low literacy skills . Journal of the American Dietetic Association, 1998: 98: 559-564.
63.
Foltz AT, Sullivan JMLimited literacy revisited implications for patient education. Cancer Practice, 1999: 7: 145-150.
64.
Kim SP, Bennett CL, Chan C., et al. QOL and outcomes research in prostate cancer patients with low socioeconomic status. Oncology, 1999: 13: 823-832.
65.
Mahloch J., Jackson JC, Chitnarong K., Sam R., Ngo LS, Taylor VMBridging cultures through the development of a cervical cancer screening video for Cambodian women in the United States. Journal of Cancer Education, 1999: 14: 109-114.
66.
Sharp LK, Knight SJ, Nadler R., et al. Quality of life in low-income patients with metastatic prostate cancer: Divergent and convergent validity of three instruments. Quality of Life Research, 1999: 8: 461-470.
67.
Bhattacharyya SK, Basu S., Banerjee S., Dastidar AG, Bagchi SRAn epidemiological survey of carcinoma cervix in north Bengal zone. Journal of the Indian Medical Association , 2000: 98: 60-66.
68.
Lasch KE, Wilkes G., Montuori LM, Chew P., Leonard C., Hilton S.Using focus group methods to develop multicultural cancer pain education materials . Pain Management Nursing, 2000: 1: 129-138.
69.
Li BD, Brown WA, Ampil FL, Burton GV, Yu H., McDonald JCPatient compliance is critical for equivalent clinical outcomes for breast cancer treated by breast-conservation therapy. Annals of Surgery , 2000: 231: 883-889.
70.
Mohrmann CC , Coleman EA, Coon SK, Lord JE, Heard JK, Cantrell MJAn analysis of printed breast cancer information for AfricanAmerican women. Journal of Cancer Education, 2000: 15: 23-27.
71.
Davis TC, Dolan NC, Ferreira MR, et al. The role of inadequate health literacy skills in colorectal cancer screening. Cancer Investigation, 2001 : 19: 193-200.
72.
Kim SP, Knight SJ, Tomori C., et al. Health literacy and shared decision making for prostate cancer patients with low socioeconomic status. Cancer Investigation , 2001: 19: 684-691.
73.
Plomer K., Schneider L., Barley G., Cifuentes M., Dignan M.Improving medical students' communication with limited-literacy patients: Project development and implementation. Journal of Cancer Education, 2001: 16: 68-71.
74.
Wofford JL, Currin D., Michielutte R., Wofford MMThe multimedia computer for low-literacy patient education: A pilot project of cancer risk perceptions. Medscape General Medicine , 2001: 3: Epub.
75.
Wydra EWThe effectiveness of a self-care management interactive multimedia module . Oncology Nursing Forum, 2001: 28: 1399-1407.
76.
Fairfield KM , Emmons KM, Rigotti NA, Colditz GAUse of a computerized risk-appraisal instrument for cancer prevention education of medical students. Journal of Cancer Education, 2002: 17: 183-185.
77.
Lindau ST, Tomori C., Lyons T., Langseth L., Bennett CL, Garcia P.The association of health literacy with cervical cancer prevention knowledge and health behaviors in a multiethnic cohort of women. American Journal of Obstetrics and Gynecology, 2002: 186: 938-943.
78.
Meade CD, Calvo A., Cuthbertson D.Impact of culturally, linguistically, and literacy relevant cancer information among Hispanic farmworker women. Journal of Cancer Education , 2002: 17: 50-54.
79.
Rao DN, Ganesh B., Dinshaw KA, Mohandas KMA case-control study of stomach cancer in Mumbai, India. International Journal of Cancer, 2002: 99: 727-731.
80.
Sharp LK, Zurawski JM, Roland PY, O'Toole C., Hines J.Health literacy, cervical cancer risk factors, and distress in low-income African-American women seeking colposcopy. Ethnicity & Disease, 2002: 12: 541-546.
81.
Wong NY, Nenny S., Guy RJ, Seow-Choen F.Adults in a high-risk area are unaware of the importance of colorectal cancer: A telephone and mail survey. Diseases of the Colon and Rectum , 2002: 45: 946-950.
82.
Avery J., Nyhof-Young J.Like a cleansing fire: Exploring the impact of short-term support groups for women with breast cancer. Journal of Psychosocial Oncology , 2003: 21: 27-51.
83.
Coleman EA, Coon S., Mohrmann C., et al. Developing and testing lay literature about breast cancer screening for AfricanAmerican women.Clinical Journal of Oncology Nursing, 2003: 7: 66-71.
84.
Coyne CA, Xu R., Raich P., Plomer K., Dignan M., Wenzel LBRandomized, controlled trial of an easy-to-read informed consent statement for clinical trial participation: A study of the Eastern Cooperative Oncology Group. Journal of Clinical Oncology, 2003: 21: 836-842.
85.
Estape T., Estape J., Grau JJ, Ferrer C.Cancer knowledge among Spanish women participating in literacy schemes . Psycho-oncology, 2003: 12: 194-197.
86.
Hahn EA, Cella D.Health outcomes assessment in vulnerable populations: Measurement challenges and recommendations. Archives of Physical Medicine and Rehabilitation , 2003: 84: S35-S42.
87.
Coleman EA, Lord J., Heard J., et al. The Delta project: Increasing breast cancer screening among rural minority and older women by targeting rural healthcare providers. Oncology Nursing Forum, 2003: 30: 669-677.
88.
Dolan NC, Ferreira MR, Davis TC, et al. Colorectal cancer screening knowledge, attitudes, and beliefs among veterans: Does literacy make a difference? Journal of Clinical Oncology, 2004: 22: 2617-2622.
89.
Friedman DB, Hoffman-Goetz L.,Arocha JFReadability of cancer information on the internet. Journal of Cancer Education, 2004: 19: 117-122.
90.
Garbers S., Chiasson MAInadequate functional health literacy in Spanish as a barrier to cervical cancer screening among immigrant Latinas in New York City. Preventing Chronic Disease, 2004: 1: A07.Epub.
91.
Green MJ, Peterson SK, Baker MW, et al. Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: A randomized controlled trial. Journal of the American Medical Association , 2004: 292: 442-452.
92.
Mongeau SW, Horowitz A.Assessment of reading level and content adequacy of oral cancer educational materials from USAF dental clinics. Journal of Cancer Education , 2004: 19: 29-36.
93.
Thompson HS , Wahl E., Fatone A., Brown K., Kwate NO, Valdimarsdottir H.Enhancing the readability of materials describing genetic risk for breast cancer. Cancer Control, 2004: 11: 245-253.
94.
Weintraub D. , Maliski SL, Fink A., Choe S., Litwin MSSuitability of prostate cancer education materials: Applying a standardized assessment tool to currently available materials. Patient Education and Counseling , 2004: 55: 275-280.
95.
Andrews JE, Johnson JD, Case DO, Allard S., Kelly K.Intention to seek information on cancer genetics. Information Research, 2005: 10: 238.Epub.
96.
BhurgriY.Cancer of the oral cavity: Trends in Karachi South (1995-2002). Asian Pacific Journal of Cancer Prevention, 2005: 6: 22-26.
97.
Ferreira MR , Dolan NC, Fitzgibbon ML, et al. Health care provider-directed intervention to increase colorectal cancer screening among veterans: Results of a randomized controlled trial. Journal of Clinical Oncology, 2005: 23: 1548-1554.
98.
Fries E., Edinboro P., McClish D., et al. Randomized trial of a low-intensity dietary intervention in rural residents: The Rural Physician Cancer Prevention Project. American Journal of Preventive Medicine, 2005: 28: 162-168.
99.
Gansler T., Henley SJ, Stein K., Nehl EJ, Smigal C., Slaughter E.Sociodemo graphic determinants of cancer treatment health literacy . Cancer, 2005: 104: 653-660.
100.
Guerra CE, Krumholz M., Shea JALiteracy and knowledge, attitudes and behavior about mammography in Latinas . Journal of Health Care for the Poor and Underserved, 2005: 16: 152-166.
101.
Guerra CE, Dominguez F., Shea JALiteracy and knowledge, attitudes, and behavior about colorectal cancer screening . Journal of Health Communication, 2005: 10: 651-663.
102.
Holmes-Rovner M., Stableford S., Fagerlin A., et al. Evidence-based patient choice: A prostate cancer decision aid in plain language. BMC Medical Informatics and Decision Making, 2005: 5: 16.Epub.
103.
Hou SIExperience of colorectal cancer screening using a home-administered kit for fecal occult blood tests among a Chinese worksite population in Taiwan . Psychological Reports, 2005: 96: 178-180.
104.
Hunter JLCervical cancer educational pamphlets: Do they miss the mark for Mexican immigrant women's needs? Cancer Control, 2005 : 12: 42-50.
105.
Kripalani S. , Sharma J., Justice E., et al. Prostate cancer screening in a low-literacy population: Does informed decision making occur? Cancer Control , 2005: 12: 116-117.
106.
Wolf MS, Chang CH, Davis T., Makoul G.Development and validation of the Communication and Attitudinal Self-Efficacy scale for cancer (CASE-cancer). Patient Education and Counseling , 2005: 57: 333-341.
107.
Basu P., Sarkar S., Mukherjee S., Ghoshal M., Mittal S., Biswas S.Women's perceptions and social barriers determine compliance to cervical screening: Results from a population based study in India. Cancer Detection and Prevention, 2006: 30: 369-374.Epub.
108.
Davis RE, Armstrong DK, Dignan M., Norling GR, Redmond J.Evaluation of educational materials on colorectal cancer screening in Appalachian Kentucky. Preventing Chronic Disease, 2006 : 3: A43.Epub.
109.
Holmes-Rovner M., Price C., Rovner DR, et al. Men's theories about benign prostatic hyperplasia and prostate cancer following a benign prostatic hyperplasia decision aid. Journal of General Internal Medicine, 2006: 21: 56-60.
110.
Jibaja-Weiss ML, Volk RJ, Friedman LC, et al. Preliminary testing of a just-in-time, user-defined values clarification exercise to aid lower literate women in making informed breast cancer treatment decisions . Health Expectations, 2006: 9: 218-231.
111.
Rogers ES, Wallace LS, Weiss BDMisperceptions of medical understanding in low-literacy patients: Implications for cancer prevention. Cancer Control, 2006 : 13: 225-229.
112.
Wolf MS, Knight SJ, Lyons EA, et al. Literacy, race, and PSA level among low-income men newly diagnosed with prostate cancer. Urology, 2006: 68: 89-93.
113.
Wu TY, Bancroft J.Filipino American women's perceptions and experiences with breast cancer screening . Oncology Nursing Forum, 2006: 33: E71-78.
114.
Davis RC, Meldrum H., Tippy PP, Weiss BD, Williams MVHow poor literacy leads to poor health care. Patient Care , 1996: 30: 94-127.
115.
Williams MV , Baker DW, Honig EG, Nowian A.Inadequate literacy is a barrier to asthma knowledge and self-care. Chest, 1998: 114: 1008-1015.
116.
Andrus MR, Roth MTHealth literacy: A review. Pharmacotherapy, 2002: 22: 282-302.
