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Originally published as JCO Early Release 10.1200/JCO.2008.20.8231 on March 23 2009 © 2009 American Society of Clinical Oncology.
Heeding Our Words: Complexities of Research Among Low-Literacy PopulationsDepartment of Obstetrics & Gynecology, Northwestern University Feinberg School of Medicine; and Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL
Rush Institute for Healthy Aging, Department of Internal Medicine, Rush University Medical Center, Chicago, IL
Division of Hematology/Oncology, Department of Internal Medicine, Northwestern University Feinberg School of Medicine; Robert H. Lurie Comprehensive Cancer Center of Northwestern University; and Center for Management of Complex Chronic Care, Jesse Brown VA Medical Center, Chicago, IL Obstacles to prevention, screening, and treatment and poor cancer-related outcomes disproportionately affect populations with low health-literacy skills.1,2 High rates of low health literacy are a major reason why medically underserved populations receive low-quality cancer prevention, screening, diagnostic, and treatment care.2 As a vast array of information and choices faces cancer patients and patients at risk for developing cancer, clear communication that is tailored to patient culture and literacy is essential.1,3 Alternatively, inadequate communication and shared understanding between patients and clinicians can result in delayed diagnosis and contribute to poor adherence to treatment plans, anxiety and uncertainty, and disparities in the quality of care.4,5 In this issue of Journal of Clinical Oncology, Kilbridge et al6 expose another dimension to the complexity of caring for and performing research in low-literacy populations. The study by Kilbridge et al illustrates that many of the words that are used in clinical and investigative settings are not well understood by low-literacy populations. Many of these misunderstood words are used in long-established measures, such as those assessing quality of life. Thus, not only do we have to take heed in the language we use in communicating with patients in our clinical work, we must investigate rigorously whether the words contained in our study measures are actually understood by low-literacy populations. Research has established that the burden of prostate cancer is greater for African American men than for white men. African American males are more likely to be diagnosed with prostate cancer; present with high prostate-specific antigen levels and more advanced stage; experience recurrence after pelvic radiotherapy or radical prostatectomy; and have greater prostate cancer-specific and stage-specific mortality rates than white men.7–9 Although the reasons underlying these disparities are not well understood, postulated factors have included racial variations in diet, genetics, biology, socioeconomic status, and access to care.10–14 Health literacy seems to be a major contributing factor in this health disparity. Kilbridge's work elevates the implication of health literacy in this equation, as the measures used to portray low-literate males' perceptions of the spectrum of their prostate cancer care may be misrepresented secondary to a fundamental inability to comprehend fully such commonly used assessment jargon. Health literacy bridges a patient's literacy skills with the demands of an increasingly complex and fragmented health care system. An estimated one third of the US population has limited literacy skills, and only 12% are estimated to have proficient health literacy.15,16 The Department of Education's National Assessment of Health Literacy found 54% of African Americans, 53% of adults with no insurance, and 76% of those who did not finish high school had basic or below-basic health literacy skills.16,17 A clear association has been shown between limited health literacy and worse health outcomes, often mediated and compounded by numerous barriers to care patients face within the health care system.18–27 Patients with low literacy were more likely to have poorer health-related knowledge, later stage of disease at presentation, increased incidence of chronic illness, less frequent screening for cancer, and increased hospitalization and costs.18,19,28-35 Studies by our group and others have identified disproportionately low rates of cancer screening, diagnostic work-up, and treatment among people with low health-literacy skills.18,23,36-39 Even in settings where access to medical care is possible (such as among Medicaid patients or veterans), these individuals experience difficulty comprehending the nuances of cancer screening, diagnosis, and treatment, and consequently do not access the necessary cancer services.18,37 Thus, this study by Kilbridge et al takes studies of health literacy and health disparities to the next level. They assessed comprehension of common medical terms used in key patient- and research-oriented interactions with patients who have prostate cancer. Drawing from items ranging from informed consent and patient education materials to measurement and treatment outcomes, Kilbridge et al found that commonly used terms are not clearly understood by low-literacy patients. The terms erection and impotence were understood by only half, and incontinence was only understood by 5% of their participants whose literacy level ranged from fourth to sixth grade. These words are commonly used in key outcome measures such as health-related quality of life. Aside from duration of survival, health-related quality of life is an important assessment for determining outcomes in prostate cancer, which ultimately dictate future directions in treatment and care.40 The implications of this study highlight a potential disparity in previously collected data. This study raises concern that prior efforts to evaluate quality of life among low-literacy men with prostate cancer may not have clearly reflected their true quality-of-life concerns. The implications of this study highlight a potential disparity in these data, and as such, earlier studies may indeed be under-representing outcomes such as health-related quality of life. This essential finding must be incorporated into future research, especially in studies that use measures containing such words. Our group has used health-related quality-of-life measures among a cohort of low-literacy men with prostate cancer in a Veterans' Administration hospital.41–43 These studies have shown that low-literate, African American men with prostate cancer at VA hospitals have favorable quality-of-life estimates when newly diagnosed, and these quality-of-life estimates decrease as the disease progresses. On the basis of the work by Kilbridge et al, we may have underrepresented the degree of quality of life among these study participants. More recently, Sanda et al44 reported on the determinants of health-related quality with respect to satisfaction of outcome of treatment for prostate cancer survivors. The African American men in their sample consistently reported less favorable outcomes than their white counterparts across treatments. Although these differences could not be determined through this study, literacy of the actual components of the quality-of-life scale used may be a factor. Although research among low-literacy populations is essential for eradication of health disparities, it is important to note the challenges of researching low-literacy populations. Because all facets of investigative engagement with participants require some level of communication, integrating low-literacy terminology and phrasing has to remain at the forefront of every document and communication episode with each study participant. This said, the study team must be educated on how best to communicate with low-literacy patients. Patient recruitment materials, informed consent documents, and all handouts and other study materials must be written at a low-literacy level. As highlighted by Kilbridge et al, we now have evidence that even study instruments need to be scrutinized for adhering to low-literacy terminology and phrasing. Indeed, we have seen improvements in outcome measures from trials that are specifically tailored towards low-literacy patients. For example, randomized clinical trials of low-literacy directed interventions have resulted in marked improvements in colorectal cancer screening rates among low–health-literate populations.37,45 We have also recently seen the increase in various patient navigator programs around the country. The NCI-funded Patient Navigator Research Program is implementing low–health-literacy interventions led by navigators of varying educational backgrounds (lay, social work, and nursing) designed to improve the diagnostic follow-up for large numbers of persons with poor health-literacy skills who also have positive screening tests for cancers of the breast, cervix, colorectum, or prostate.46 The public health and policy implications of the study by Kilbridge et al are notable. Low literacy is a significant barrier to all aspects of clinical and investigative activities surrounding prostate cancer. We know that most health education materials describing prostate cancer screening, diagnosis, and treatment are written at the high school or college level and may be difficult to understand by men with poor literacy skills.18,39,47 Data from Kilbridge et al illustrate that we must address literacy and culture beyond the words used in written and oral communication on education regarding these topics. Given that those older than 65 years of age have the lowest levels of health literacy and comprise the largest demographic of prostate cancer patients, it is imperative that clinicians and investigators play close attention to literacy in all aspects of prostate cancer, including the words we use frequently. Such detailed attention to low literacy is essential in our pursuit to eradicate health disparities among men with prostate cancer.16,17,48 We must incorporate knowledge of low literacy into transforming the entire gamut of prostate cancer care and investigation from informed consent to education to our outcomes measures. Only through this complete transformation will the state of our research be most representative of all of our patients and thus most translatable from bench to the true bedside. With such full-concerted efforts, we will move closer towards eradication of health disparities. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The author(s) indicated no potential conflicts of interest. AUTHOR CONTRIBUTIONS Conception and design: Melissa A. Simon, XinQi Dong, Charles L. Bennett Administrative support: Narissa Nonzee Manuscript writing: Melissa A. Simon, XinQi Dong, Narissa Nonzee, Charles L. Bennett Final approval of manuscript: Melissa A. Simon, XinQi Dong, Narissa Nonzee, Charles L. Bennett REFERENCES 1. Institute of Medicine: Health Literacy. A Prescription to End Confusion. Washington, DC: National Academies Press, 2004. 2. American Medical Association Ad Hoc Committee on Health Literacy. Health Literacy: Report of the Council on Scientific Affairs. JAMA 281:552–557, 1999. 3. American Cancer Society. Cancer Facts and Figures 2007. Atlanta, GA: American Cancer Society, 2007. 4. Davis TC, Williams MV, Marin E, et al: Health literacy and cancer communication. CA Cancer J Clin 52:134–149, 2002. 5. Epstein RM, Street RL Jr. Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering. Bethesda, MD: National Cancer Institute, 2007. 6. Kilbridge KL, Fraser G, Krahn M, et al: Lack of comprehension of common prostate cancer terms in an underserved population. J Clin Oncol 27:2015–2021, 2009. 7. Jemal A, Thun MJ, Ries LA, et al: Annual report to the nation on the status of cancer, 1975-2005, featuring trends in lung cancer, tobacco use, and tobacco control. J Natl Cancer Inst 100:1672–1694, 2008. 8. Grossfeld GD, Latini DM, Downs T, et al: Is ethnicity an independent predictor of prostate cancer recurrence after radical prostatectomy? J Urol 168:2510–2515, 2002.[CrossRef][Medline] 9. Powell IJ, Banerjee M, Novallo M, et al: Prostate cancer biochemical recurrence stage for stage is more frequent among African-American than white men with locally advanced but not organ-confined disease. Urology 55:246–251, 2000.[CrossRef][Medline] 10. Demark-Wahnefried W, Strigo T, Catoe K, et al: Knowledge, beliefs, and prior screening behavior among blacks and whites reporting for prostate cancer screening. Urology 46:346–351, 1995.[CrossRef][Medline] 11. Bennett CL, Price DK, Kim S, et al: Racial variation in CAG repeat lengths within the androgen receptor gene among prostate cancer patients of lower socioeconomic status. J Clin Oncol 20:3599–3604, 2002. 12. Dale W, Vijayakumar S, Lawlor EF, et al: Prostate cancer, race, and socioeconomic status: Inadequate adjustment for social factors in assessing racial differences. Prostate 29:271–281, 1996.[CrossRef][Medline] 13. Powell IJ, Schwartz K, Hussain M: Removal of the financial barrier to health care: Does it impact on prostate cancer at presentation and survival? A comparative study between black and white men in a Veterans Affairs system. Urology 46:825–830, 1995.[CrossRef][Medline] 14. Optenberg SA, Thompson IM, Friedrichs P, et al: Race, treatment, and long-term survival from prostate cancer in an equal-access medical care delivery system. JAMA 274:1599–1605, 1995. 15. US Department of Health and Human Services: Healthy People 2010. With Understanding and Improving Health and Objectives for Improving Health. Washington, DC: US Government Printing Office, 2000. 16. Kutner M GE, Baer J. A First Look at the Literacy of America's Adults in the 21st Century. Washington, DC: US Department of Education, 2005. 17. Rudd RE, Kirsch I, Yamamoto K. Literacy and Health in America: A Policy Report. Princeton, NJ: Educational Testing Service, 2004. 18. Bennett CL, Ferreira MR, Davis TC, et al: Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. J Clin Oncol 16:3101–3104, 1998. 19. Baker DW, Parker RM, Williams MV, et al: The relationship of patient reading ability to self-reported health and use of health services. Am J Public Health 87:1027–1030, 1997. 20. Kalichman SC, Ramachandran B, Catz S: Adherence to combination antiretroviral therapies in HIV patients of low health literacy. J Gen Intern Med 14:267–273, 1999.[CrossRef][Medline] 21. Schillinger D, Grumbach K, Piette J, et al: Association of health literacy with diabetes outcomes. JAMA 288:475–482, 2002. 22. Dewalt DA, Berkman ND, Sheridan S, et al: Literacy and health outcomes: A systematic review of the literature. J Gen Intern Med 19:1228–1239, 2004.[CrossRef][Medline] 23. Wolf MS, Gazmararian JA, Baker DW: Health literacy and functional health status among older adults. Arch Intern Med 165:1946–1952, 2005. 24. Paasche-Orlow MK, Wolf MS: The causal pathways linking health literacy to health outcomes. Am J Health Behav 31:S19–S26, 2007 (suppl 1.[Medline] 25. Pignone MP, DeWalt DA: Health literacy and heart failure care in minority communities. Ann Intern Med 146:312; 2007. 26. Baker DW, Wolf MS, Feinglass J, et al: Health literacy and mortality among elderly persons. Arch Intern Med 167:1503–1509, 2007. 27. Schillinger D, Barton LR, Karter AJ, et al: Does literacy mediate the relationship between education and health outcomes? A study of a low-income population with diabetes. Public Health Rep 121:245–254, 2006.[Medline] 28. Baker DW, Parker RM, Williams MV, et al: Health literacy and the risk of hospital admission. J Gen Intern Med 13:791–798, 1998.[CrossRef][Medline] 29. Davis TC, Dolan NC, Ferreira MR, et al: The role of inadequate health literacy skills in colorectal cancer screening. Cancer Invest 19:193–200, 2001.[CrossRef][Medline] 30. Davis TC, Wolf MS, Bass PF 3rd, et al: Low literacy impairs comprehension of prescription drug warning labels. J Gen Intern Med 21:847–851, 2006.[CrossRef][Medline] 31. Gazmararian JA, Williams MV, Peel J, et al: Health literacy and knowledge of chronic disease. Patient Educ Couns 51:267–275, 2003.[CrossRef][Medline] 32. Mancuso CA, Rincon M: Impact of health literacy on longitudinal asthma outcomes. J Gen Intern Med 21:813–817, 2006.[CrossRef][Medline] 33. Osborn CY, Paasche-Orlow MK, Davis TC, et al: Health literacy: An overlooked factor in understanding HIV health disparities. Am J Prev Med 33:374–378, 2007.[CrossRef][Medline] 34. Scott TL, Gazmararian JA, Williams MV, et al: Health literacy and preventive health care use among Medicare enrollees in a managed care organization. Med Care 40:395–404, 2002.[CrossRef][Medline] 35. Howard DH, Gazmararian J, Parker RM: The impact of low health literacy on the medical costs of Medicare managed care enrollees. Am J Med 118:371–377, 2005.[CrossRef][Medline] 36. Dolan NC, Ferreira MR, Davis TC, et al: Colorectal cancer screening knowledge, attitudes, and beliefs among veterans: Does literacy make a difference? J Clin Oncol 22:2617–2622, 2004. 37. 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. J Clin Oncol 23:1548–1554, 2005. 38. Lindau ST, Basu A, Leitsch SA: Health literacy as a predictor of follow-up after an abnormal Pap smear: A prospective study. J Gen Intern Med 21:829–834, 2006.[CrossRef][Medline] 39. Wolf MS, Knight SJ, Lyons EA, et al: Literacy, race, and PSA level among low-income men newly diagnosed with prostate cancer. Urology 68:89–93, 2006.[Medline] 40. Barry MJ: Quality of life and prostate cancer treatment. J Urol 162:407; 1999.[CrossRef][Medline] 41. Siston AK, Knight SJ, Slimack NP, et al: Quality of life after a diagnosis of prostate cancer among men of lower socioeconomic status: Results from the Veterans Affairs Cancer of the Prostate Outcomes Study. Urology 61:172–178, 2003.[CrossRef][Medline] 42. Kim SP, Bennett CL, Chan C, et al: QOL and outcomes research in prostate cancer patients with low socioeconomic status. Oncology (Williston Park) 13:823–832, 1999.[Medline] 43. Knight SJ, Chmiel JS, Kuzel T, et al: Quality of life in metastatic prostate cancer among men of lower socioeconomic status: Feasibility and criterion related validity of 3 measures. J Urol 160:1765–1769, 1998.[CrossRef][Medline] 44. Sanda MG, Dunn RL, Michalski J, et al: Quality of life and satisfaction with outcome among prostate-cancer survivors. N Engl J Med 358:1250–1261, 2008. 45. Pignone M, DeWalt DA, Sheridan S, et al: Interventions to improve health outcomes for patients with low literacy: A systematic review. J Gen Intern Med 20:185–192, 2005.[CrossRef][Medline] 46. Freund KM, Battaglia TA, Calhoun E, et al: National Cancer Institute Patient Navigation Research Program: Methods, protocol, and measures. Cancer 113:3391–3399, 2008.[CrossRef][Medline] 47. Richardson JT, Webster JD, Fields NJ: Uncovering myths and transforming realities among low-SES African-American men: Implications for reducing prostate cancer disparities. J Natl Med Assoc 96:1295–1302, 2004.[Medline] 48. Drake BE, Keane TE, Mosley CM, et al: Prostate cancer disparities in South Carolina: Early detection, special programs, and descriptive epidemiology. J S C Med Assoc 102:241–249, 2006.[Medline]
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Copyright © 2009 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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