What should laypersons know about cancer? Towards an operational definition of cancer literacy.

OBJECTIVE To operationally define cancer literacy, understanding which aspects of cancer are important to be known by a layperson to be considered cancer literate. METHODS A Delphi study in three consecutive rounds was conducted among a panel of Swiss cancer experts (oncologists, GPs, nurses from oncology wards, social workers, public health experts). RESULTS The result of the Delphi process is a first operational definition of the concept of cancer literacy, a list of the aspects of cancer that, in the expert's view, laypeople should know to be considered cancer literate. CONCLUSIONS We have now an idea of what should be known about cancer. The study also provides us with some useful hints about what should be communicated about cancer, e.g. via public communication campaigns, school education, or media. PRACTICE IMPLICATIONS The operational definition of the concept can be used for the development and the validation of a measure of cancer literacy, not anymore limited to basic literacy and numeracy skills.

[1]  Amiram Gafni,et al.  Shared decision-making in the medical encounter , 1994 .

[2]  Rachelle Buchbinder,et al.  Conceptualising health literacy from the patient perspective. , 2010, Patient education and counseling.

[3]  D. Baker.  The meaning and the measure of health literacy , 2006, Journal of general internal medicine.

[4]  E. Hendriks,et al.  Considered judgement in evidence-based guideline development. , 2006, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[5]  Josephine M. Mancuso.  Assessment and measurement of health literacy: an integrative review of the literature. , 2009, Nursing & health sciences.

[6]  Sara A. Leitsch,et al.  Health literacy as a predictor of follow-up after an abnormal pap smear , 2006, Journal of General Internal Medicine.

[7]  C. Bennett,et al.  Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. , 1998, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[8]  C. Duffield.  The Delphi technique: a comparison of results obtained using two expert panels. , 1993, International journal of nursing studies.

[9]  A. Fagerlin,et al.  An informed decision? Breast cancer patients and their knowledge about treatment. , 2006, Patient education and counseling.

[10]  J. Gazmararian,et al.  Impact of health literacy on socioeconomic and racial differences in health in an elderly population , 2006, Journal of General Internal Medicine.

[11]  Gary Kreps,et al.  The Impact of Communication on Cancer Risk, Incidence, Morbidity, Mortality, and Quality of Life , 2003, Health communication.

[12]  T. Davis,et al.  Health Literacy and Cancer Communication , 2002, CA: a cancer journal for clinicians.

[13]  A. Mabiso,et al.  A community-based approach to translating and testing cancer literacy assessment tools , 2009, Journal of Cancer Education.

[14]  R. Hornik,et al.  Cancer Information Scanning and Seeking Behavior is Associated with Knowledge, Lifestyle Choices, and Screening , 2006, Journal of health communication.

[15]  Kathleen N. Lohr,et al.  A Systematic Review of the Literature , 2004 .

[16]  D. Nutbeam.  The evolving concept of health literacy. , 2008, Social science & medicine.

[17]  Andrew Pleasant,et al.  Understanding health literacy: an expanded model. , 2005, Health promotion international.

[18]  Sara Rubinelli,et al.  Health literacy beyond knowledge and behaviour: letting the patient be a patient , 2009, International Journal of Public Health.

[19]  Don Nutbeam,et al.  Health promotion glossary. , 1986, Health promotion.

[20]  T. J. Gordon,et al.  REPORT ON A LONG-RANGE FORECASTING STUDY, , 1964 .

[21]  I. Kickbusch.  Health literacy: a search for new categories. , 2002, Health promotion international.

[22]  P. Korp,et al.  Health on the Internet: implications for health promotion. , 2006, Health education research.

[23]  Mark V. Williams,et al.  Health literacy and knowledge of chronic disease. , 2003, Patient education and counseling.

[24]  T. Sentell,et al.  Importance of adult literacy in understanding health disparities , 2006, Journal of General Internal Medicine.

[25]  David A. Kindig,et al.  Health literacy : a prescription to end confusion , 2004 .

[26]  J. Shea,et al.  Literacy and Knowledge, Attitudes and Behavior About Mammography in Latinas , 2005, Journal of health care for the poor and underserved.

[27]  D. Nutbeam.  Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century , 2000 .

[28]  M. H. Alciati,et al.  Cancer Control Research and Literacy , 1999, Journal of health care for the poor and underserved.

[29]  Murray Turoff,et al.  The Delphi Method: Techniques and Applications , 1976 .

[30]  Eiji Yano,et al.  Patient health literacy and participation in the health‐care process , 2008, Health expectations : an international journal of public participation in health care and health policy.

[31]  F. Fletcher,et al.  Working with African American women to develop a cancer literacy assessment tool , 2009, Journal of Cancer Education.

[32]  Mark V. Williams,et al.  Test of Functional Health Literacy in Adults , 2016 .

[33]  Don Nutbeam,et al.  Defining and measuring health literacy: what can we learn from literacy studies? , 2009, International Journal of Public Health.

[34]  S. Gabriel,et al.  Systematic Review of the Literature , 2021, Adherence to Antiretroviral Therapy among Perinatal Women in Guyana.

[35]  Nancy Breen,et al.  Cancer Knowledge and Disparities in the Information Age , 2006, Journal of health communication.

[36]  Sabine Häder,et al.  Die Delphi-Technik in den Sozialwissenschaften , 2000 .

[37]  E. J. Mayeaux,et al.  Rapid estimate of adult literacy in medicine: a shortened screening instrument. , 1993, Family medicine.

[38]  Improvement,et al.  Adult literacy in America : a first look at the results of the National Adult Literacy Survey , 1993 .

[39]  Lawrence W. Green,et al.  Book Review , 2000 .

[40]  C. Charles,et al.  Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). , 1997, Social science & medicine.

[41]  D. Nutbeam,et al.  Health promotion glossary (1998) , 1998 .

[42]  S. Wieser,et al.  The costs of limited health literacy: a systematic review , 2009, International Journal of Public Health.

[43]  Anne B. Newman,et al.  Limited literacy and mortality in the elderly , 2006, Journal of General Internal Medicine.

[44]  Ronald E. Rice,et al.  Public Communication Campaigns , 2012 .

[45]  A. Jemal,et al.  Cancer Statistics, 2009 , 2009, CA: a cancer journal for clinicians.

[46]  E. Arkin.  Cancer risk communication-what we know. , 1999, Journal of the National Cancer Institute. Monographs.

[47]  M. Kreuter,et al.  Applications workbook to accompany health promotion planning : an educational and ecological approach , 1999 .

[48]  R. Rudd,et al.  Health and Literacy: A Review of Medical and Public Health Literature , 1999 .