The development and testing of a brief ('gist-based') supplementary colorectal cancer screening information leaflet

Patient Education and Counseling

Volumn 93, Issue 3, 2013, Pages 619-625

  Smith, Samuel G ^a   Wolf, Michael S ^b   Obichere, Austin ^c   Raine, Rosalind ^a   Wardle, Jane ^a   von Wagner, Christian ^a  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b NORTHWESTERN UNIVERSITY   (United States)

^c UNIVERSITY COLLEGE LONDON HOSPITALS   (United Kingdom)

Author keywords

Colorectal cancer; Fuzzy trace theory; Health literacy; Information design; Numeracy; Screening; User testing

Indexed keywords

ADULT; ARTICLE; CANCER SCREENING; COLORECTAL CANCER; FEMALE; FUZZY TRACE THEORY; HEALTH PROMOTION; HUMAN; INTERVIEW; MALE; MEDICAL INFORMATION; OCCULT BLOOD TEST; PATIENT EDUCATION; PRACTICE GUIDELINE; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; THEORY; UNITED KINGDOM; AGED; COLORECTAL NEOPLASMS; COMPREHENSION; EARLY CANCER DIAGNOSIS; ENGLAND; FUZZY LOGIC; HEALTH LITERACY; MASS SCREENING; MIDDLE AGED; PSYCHOLOGICAL MODEL; PUBLICATION; READING;

ADULT; AGED; COLORECTAL NEOPLASMS; COMPREHENSION; EARLY DETECTION OF CANCER; ENGLAND; FEMALE; FUZZY LOGIC; HEALTH LITERACY; HUMANS; MALE; MASS SCREENING; MIDDLE AGED; MODELS, PSYCHOLOGICAL; PAMPHLETS; READING;

EID: 84888309054     PISSN: 07383991     EISSN: 18735134     Source Type: Journal    
DOI: 10.1016/j.pec.2013.08.013     Document Type: Article

References (60)

1. Benson V.S., Patnick J., Davies A.K., Nadel M.R., Smith R.A., Atkin W.S. Colorectal cancer screening: a comparison of 35 initiatives in 17 countries. Int J Cancer 2008, 122:1357-1367.
2. von Wagner C., Good A., Whitaker K.L., Wardle J. Psychosocial determinants of socioeconomic inequalities in cancer screening participation: a conceptual framework. Epidemiol Rev 2011, 33:135-147.
3. von Wagner C., Steptoe A., Wolf M.S., Wardle J. Health literacy and health actions: a review and a framework from health psychology. Health Educ Behav 2008, 36:860-877.
4. Smith S.G., Vart G., Wolf M., Obichere A., Baker H.J., Raine R., et al. How do people interpret information about colorectal cancer screening: observations from a think-aloud study. Health Expect 2013, [in press].
5. von Wagner C., Semmler C., Good A., Wardle J. Health literacy and self-efficacy for participating in colorectal cancer screening: the role of information processing. Patient Educ Couns 2009, 75:352-357.
6. von Wagner C., Baio G., Raine R., Snowball J., Morris S., Atkin W., et al. Inequalities in participation in an organized national colorectal cancer screening programme: results from the first 2.6 million invitations in England. Int J Epidemiol 2011, 40:712-718.
7. Viswanath K. The communications revolution and cancer control. Nat Rev Cancer 2005, 5:828-835.
8. Waller J., Macedo A., Von Wagner C., Simon A.E., Jones C., Hammersley V., et al. Communication about colorectal cancer screening in Britain: public preferences for an expert recommendation. Br J Cancer 2012, 107:1938-1943.
9. McCaffery K., Sheridan S., Nutbeam D., Clayman M., Kelly-Blake K., Rovner M., et al. Addressing health literacy. Update of the international patient decision aids standards (IPDAS) col laboration's background document. Chapter J 2012, Available from: http://ipdas.ohri.ca/resources.html [accessed 28.02.12].
10. DeWalt D., Callahan L., Hawk V., Broucksou K., Hink A., Rudd R., et al. Health literacy universal precautions toolkit. Report number: 10-0046-EF 2010, Available from: http://www.ahrq.gov/qual/literacy/healthliteracytoolkit.pdf [accessed 28.02.13].
11. Writing health communication: an evidence-based guide 2011, Sage Publications, Ltd., London. C. Abraham, M. Kools (Eds.).
12. Plain English Campaign How to write in plain English 2009, Available from: http://www.plainenglish.co.uk/files/howto.pdf [accessed 28.02.13].
13. Austoker J., Giordano L., Hewitson P., Villain P. European guidelines for quality assurance in colorectal cancer screening and diagnosis. 1st Edition - Communication. Endoscopy 2012, 44:164-185.
14. Ramirez A., Forbes L. Approach to developing information about NHS cancer screening programmes 2012, King's Health Partners, Available from: http://www.informedchoiceaboutcancerscreening.org/wp-content/uploads/2012/04/Approach-to-informed-choice-about-cancer-screening.pdf [accessed 28.02.13].
15. General Medical Council Consent: patients and doctors making decisions together 2008, Available from: http://www.gmc-uk.org/static/documents/content/Consent_-_English_0911.pdf [accessed 28.02.13].
16. Reyna V.F. A theory of medical decision making and health: fuzzy trace theory. Med Decis Making 2008, 28:850-865.
17. Reyna V.F. Risk perception and communication in vaccination decisions: a fuzzy-trace theory approach. Vaccine 2012, 30:3790-3797.
18. Reyna V.F., Brainerd C.J. Fuzzy-trace theory and framing effects in choice: gist extraction, truncation, and conversion. J Behav Decis Making 1991, 4:249-262.
19. Reyna V.F., Lloyd F.J. Physician decision making and cardiac risk: effects of knowledge, risk perception, risk tolerance, and fuzzy processing. J Exp Psychol Appl 2006, 12:179-195.
20. Reyna V.F. Across the lifespan. Communicating risks and benefits: an evidence-based user's guide 2011, 111-120. Food and Drug Administration, US Department of Health and Human Services, Silver Spring, MD. B. Fischhoff, N.T. Brewer, J.S. Downs (Eds.).
21. Cressey D. Informed consent on trial. Nature 2012, 482:16.
22. Peters E., Klein W., Kaufman A., Meilleur L., Dixon A. More is not always better: intuitions about effective public policy can lead to unintended consequences. Soc Issues Policy Rev 2013, 7:114-148.
23. Peters E., Dieckmann N., Dixon A., Hibbard J.H., Mertz C.K. Less is more in presenting quality information to consumers. Med Care Res Rev 2007, 64:169-190.
24. Hibbard J.H., Peters E. Supporting informed consumer health care decisions: data presentation approaches that facilitate the use of information in choice. Annu Rev Public Health 2003, 24:413-433.
25. Zikmund-Fisher B.J., Fagerlin A., Ubel P.A. A demonstration of "less can be more" in risk graphics. Med Decis Making 2010, 30:661-671.
26. Elwyn G., Stiel M., Durand M.-A., Boivin J. The design of patient decision support interventions: addressing the theory-practice gap. J Eval Clin Pract 2011, 17:565-574.
27. Zikmund-Fisher B.J. The right tool is what they need, not what we have a taxonomy of appropriate levels of precision in patient risk communication. Med Care Res Rev 2013, 70:37-49.
28. Berry D.C., Hochhauser M. Verbal labels can triple perceived risk in clinical trials. Drug Inf J 2006, 40:249-258.
29. Knapp P., Gardner P.H., Raynor D.K., Woolf E., McMillan B. Perceived risk of tamoxifen side effects: a study of the use of absolute frequencies or frequency bands, with or without verbal descriptors. Patient Educ Couns 2010, 79:267-271.
30. Zikmund-Fisher B.J., Fagerlin A., Keeton K., Ubel P.A. Does labeling prenatal screening test results as negative or positive affect a woman's responses?. Am J Obstet Gynecol 2007, 197. 528.e1-6.
31. Peters E., Dieckmann N.F., Västfjäll D.K.C., Slovic P., Hibbard J.H. Bringing meaning to numbers: the impact of evaluative categories on decisions. J Exp Psychol Appl 2009, 15:213-227.
32. Galesic M., Garcia-Retamero R. Statistical numeracy for health: a cross-cultural comparison with probabilistic national samples. Arch Intern Med 2010, 170:462-468.
33. Scholefield J.H., Moss S.M., Mangham C.M., Whynes D.K., Hardcastle J.D. Nottingham trial of faecal occult blood testing for colorectal cancer: a 20-year follow-up. Gut 2012, 61:1036-1040.
34. Smith S.K., Trevena L., Nutbeam D., Barratt A., McCaffery K.J. Information needs and preferences of low and high literacy consumers for decisions about colorectal cancer screening: utilizing a linguistic model. Health Expect 2008, 11:123-136.
35. Dickinson D., Raynor D., Duman M. Patient information leaflets for medicines: using consumer testing to determine the most effective design. Patient Educ Couns 2001, 43:147-159.
36. Wilson E.A.H., Wolf M.S., Curtis L.M., Clayman M.L., Cameron K.A., Eigen K.V., et al. Literacy, cognitive ability, and the retention of health-related information about colorectal cancer screening. J Health Commun 2010, 15:116-125.
37. Wolf M.S., Wilson E.A.H., Rapp D.N., Waite K.R., Bocchini M.V., Davis T.C., et al. Literacy and learning in health care. Pediatrics 2009, 124:275-281.
38. Wolf M.S., Curtis L.M., Wilson E.A.H., Revelle W., Waite K.R., Smith S.G., et al. Literacy, cognitive function, and health: results of the LitCog study. J Gen Intern Med 2012, 27:1300-1307.
39. Curtis V., Aunger R., Rabie T. Evidence that disgust evolved to protect from risk of disease. Proc Biol Sci 2004, 271:131-133.
40. Dolan N.C., Ferreira M.R., Davis T.C., Fitzgibbon M.L., Rademaker A., Liu D., et al. Colorectal cancer screening knowledge, attitudes, and beliefs among veterans: does literacy make a difference?. J Clin Oncol 2004, 22:2617-2622.
41. Chapple A., Ziebland S., Hewitson P., McPherson A. What affects the uptake of screening for bowel cancer using a faecal occult blood test (FOBt): a qualitative study. Soc Sci Med 2008, 66:2425-2435.
42. von Wagner C., Good A., Smith S.G., Wardle J. Responses to procedural information about colorectal cancer screening using faecal occult blood testing: the role of consideration of future consequences. Health Expect 2012, 15:176-186.
43. Garner M., Ning Z., Francis J. A framework for the evaluation of patient information leaflets. Health Expect 2012, 15:283-294.
44. Ford J.G., Howerton M.W., Lai G.Y., Gary T.L., Bolen S., Gibbons M.C., et al. Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer 2008, 112:228-242.
45. Knapp P., Raynor D.K., Silcock J., Parkinson B. Can user testing of a clinical trial patient information sheet make it fit-for-purpose? A randomized controlled trial. BMC Med 2011, 9:89.
46. Knapp P., Raynor D.K., Silcock J., Parkinson B. Performance-based readability testing of participant information for a Phase 3 IVF trial. Trials 2009, 10:79.
47. Raynor D.K., Knapp P., Silcock J., Parkinson B., Feeney K. "User-testing" as a method for testing the fitness-for-purpose of written medicine information. Patient Educ Couns 2011, 83:404-410.
48. von Wagner C., Knight K., Steptoe A., Wardle J. Functional health literacy and health-promoting behaviour in a national sample of British adults. J Epidemiol Community Health 2007, 61:1086-1090.
49. Parker R.M., Baker D.W., Williams M.V., Nurss J.R. The test of functional health literacy in adults: a new instrument for measuring patients' literacy skills. J Gen Intern Med 1995, 10:537-541.
50. Kincaid J.P., Fishburne R., Rogers R., Chissom B. Derivation of new readability formulas (automated readability index, fog count and flesch reading ease formula) for navy enlisted personnel 1975, Naval Air Station, Memphis, TN.
51. European Commission Draft Guideline on the readability of the label and package leaflet of medicinal products for human use 2006, Available from: http://ec.europa.eu/health/files/pharmacos/docs/doc2006/09_2006/readability_consultation_2006_09_25_en.pdf [accessed online 24.07.13].
52. Smith S.K., Trevena L., Simpson J.M., Barratt A., Nutbeam D., McCaffery K.J. A decision aid to support informed choices about bowel cancer screening among adults with low education: randomised controlled trial. Brit Med J 2010, 341:c5370.
53. Tait A.R., Zikmund-Fisher B.J., Fagerlin A., Voepel-Lewis T. Effect of various risk/benefit trade-offs on parents' understanding of a pediatric research study. Pediatrics 2010, 125:1475-1482.
54. Tait A.R., Voepel-Lewis T., Zikmund-Fisher B.J., Fagerlin A. Presenting research risks and benefits to parents: does format matter?. Anesth Analg 2010, 111:718-723.
55. Braun V., Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006, 3:77-101.
56. Reyna V.F., Brainerd C.J. Fuzzy-trace theory: an interim synthesis. Learn Individ Differ 1995, 7:1-75.
57. European Commission Key data on education in Europe. Education, audiovisual and culture executive agency 2012, Available from: http://epp.eurostat.ec.europa.eu/cache/ITY_OFFPUB/978-92-9201-242-7/EN/978-92-9201-242-7-EN.PDF [accessed 28.02.13].
58. Yancey A.K., Ortega A.N., Kumanyika S.K. Effective recruitment and retention of minority research participants. Annu Rev Public Health 2006, 27:1-28.
59. Wilson E.A.H., Makoul G., Bojarski E.A., Bailey S.C., Waite K.R., Rapp D.N., et al. Comparative analysis of print and multimedia health materials: a review of the literature. Patient Educ Couns 2012, 89:7-14.
60. Brown J., Michie S., Geraghty A.W.A., Miller S., Yardley L., Gardner B., et al. A pilot study of StopAdvisor: a theory-based interactive internet-based smoking cessation intervention aimed across the social spectrum. Addict Behav 2012, 37:1365-1370.