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American Journal of Kidney Diseases

Health Literacy in Nephrology: Why Is It Important?

      Related Article, p. 73
      Limited health literacy is a daunting and highly prevalent public health issue that affects 36% of Americans.
      • Kutner M.
      • Greenberg E.
      • Jin Y.
      • Paulson C.
      The health literacy of America's adults: results from the 2003 National Assessment of Adult Literacy.
      In addition, it is estimated that ∼23% of patients with chronic kidney disease (CKD) have limited health literacy,
      • Fraser S.D.
      • Roderick P.J.
      • Casey M.
      • Taal M.W.
      • Yuen H.M.
      • Nutbeam D.
      Prevalence and associations of limited health literacy in chronic kidney disease: a systematic review.
      and for those treated with maintenance dialysis, studies have found prevalences ranging from 14%-32%.
      • Cavanaugh K.L.
      • Wingard R.L.
      • Hakim R.M.
      • et al.
      Low health literacy associates with increased mortality in ESRD.
      • Green J.A.
      • Mor M.K.
      • Shields A.M.
      • et al.
      Prevalence and demographic and clinical associations of health literacy in patients on maintenance hemodialysis.
      Health literacy, or the ability to read, understand, and act upon health information,
      • Andrus M.R.
      • Roth M.T.
      Health literacy: a review.
      is officially defined by the Institute of Medicine (2004) and Healthy People 2010 as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”
      • Kutner M.
      • Greenberg E.
      • Jin Y.
      • Paulson C.
      The health literacy of America's adults: results from the 2003 National Assessment of Adult Literacy.
      US Department of Health and Human Services
      Healthy People 2010.
      National Action Plan to Improve Health Literacy.
      (piii) Although limited health literacy has been evaluated and associated with adverse outcomes in other comorbid conditions, such as diabetes,
      • Cavanaugh K.L.
      Health literacy in diabetes care: explanation, evidence and equipment.
      • Cavanaugh K.
      • Wallston K.A.
      • Gebretsadik T.
      • et al.
      Addressing literacy and numeracy to improve diabetes care: two randomized controlled trials.
      • Osborn C.Y.
      • Cavanaugh K.
      • Wallston K.A.
      • White R.O.
      • Rothman R.L.
      Diabetes numeracy: an overlooked factor in understanding racial disparities in glycemic control.
      • Cavanaugh K.
      • Huizinga M.M.
      • Wallston K.A.
      • et al.
      Association of numeracy and diabetes control.
      hypertension,
      • Boulware L.E.
      • Carson K.A.
      • Troll M.U.
      • Powe N.R.
      • Cooper L.A.
      Perceived susceptibility to chronic kidney disease among high-risk patients seen in primary care practices.
      • Gazmararian J.A.
      • Kripalani S.
      • Miller M.J.
      • Echt K.V.
      • Ren J.
      • Rask K.
      Factors associated with medication refill adherence in cardiovascular-related diseases: a focus on health literacy.
      • Wright-Nunes J.A.
      • Luther J.M.
      • Ikizler T.A.
      • Cavanaugh K.L.
      Patient knowledge of blood pressure target is associated with improved blood pressure control in chronic kidney disease.
      human immunodeficiency virus (HIV) infection,
      • Kalichman S.C.
      • Pope H.
      • White D.
      • et al.
      Association between health literacy and HIV treatment adherence: further evidence from objectively measured medication adherence.
      • Kalichman S.C.
      • Rompa D.
      Functional health literacy is associated with health status and health-related knowledge in people living with HIV-AIDS.
      • Kalichman S.C.
      • Benotsch E.
      • Suarez T.
      • Catz S.
      • Miller J.
      • Rompa D.
      Health literacy and health-related knowledge among persons living with HIV/AIDS.
      hospitalizations,
      • Williams M.V.
      • Parker R.M.
      • Baker D.W.
      • et al.
      Inadequate functional health literacy among patients at two public hospitals.
      and other chronic diseases,
      • Gazmararian J.A.
      • Williams M.V.
      • Peel J.
      • Baker D.W.
      Health literacy and knowledge of chronic disease.
      • Williams M.V.
      • Baker D.W.
      • Parker R.M.
      • Nurss J.R.
      Relationship of functional health literacy to patients' knowledge of their chronic disease A study of patients with hypertension and diabetes.
      less is known about the health literacy of people with CKD.
      • Cavanaugh K.L.
      • Wingard R.L.
      • Hakim R.M.
      • et al.
      Low health literacy associates with increased mortality in ESRD.
      • Wright-Nunes J.A.
      • Luther J.M.
      • Ikizler T.A.
      • Cavanaugh K.L.
      Patient knowledge of blood pressure target is associated with improved blood pressure control in chronic kidney disease.
      • Adeseun G.A.
      • Bonney C.C.
      • Rosas S.E.
      Health literacy associated with blood pressure but not other cardiovascular disease risk factors among dialysis patients.
      • Wright Nunes J.A.
      • Wallston K.A.
      • Eden S.K.
      • Shintani A.K.
      • Ikizler T.A.
      • Cavanaugh K.L.
      Associations among perceived and objective disease knowledge and satisfaction with physician communication in patients with chronic kidney disease.
      In a seminal article, Cavanaugh et al
      • Cavanaugh K.L.
      • Wingard R.L.
      • Hakim R.M.
      • et al.
      Low health literacy associates with increased mortality in ESRD.
      showed that limited health literacy was associated with an increased risk of mortality in patients treated with maintenance dialysis. In addition, Grubbs et al
      • Grubbs V.
      • Gregorich S.E.
      • Perez-Stable E.J.
      • Hsu C.Y.
      Health literacy and access to kidney transplantation.
      showed that limited health literacy was associated with decreased access to transplantation, and others have shown associations between limited health literacy and poor blood pressure control
      • Adeseun G.A.
      • Bonney C.C.
      • Rosas S.E.
      Health literacy associated with blood pressure but not other cardiovascular disease risk factors among dialysis patients.
      and poor peritoneal dialysis and self-management skills.
      • Kleinpeter M.A.
      Health literacy affects peritoneal dialysis performance and outcomes.
      • Lai A.Y.
      • Ishikawa H.
      • Kiuchi T.
      • Mooppil N.
      • Griva K.
      Communicative and critical health literacy, and self-management behaviors in end-stage renal disease patients with diabetes on hemodialysis.
      Patient characteristics associated with limited health literacy include older age (aged ≥65 years); belonging to a racial or ethnic minority group; being a recent refugee, immigrant, or non-native English speaker; having less than a high school education; or having an income at the poverty level or lower.
      • Kutner M.
      • Greenberg E.
      • Jin Y.
      • Paulson C.
      The health literacy of America's adults: results from the 2003 National Assessment of Adult Literacy.
      These factors are highly prevalent in patients with CKD. Less is known regarding the mechanisms of how health literacy is associated with adverse outcomes in patients with CKD.
      In this issue of AJKD, Green et al
      • Green J.A.
      • Mor M.K.
      • Shields A.M.
      • et al.
      Associations of health literacy with dialysis adherence and health resource utilization in patients receiving maintenance hemodialysis.
      evaluated the association of health literacy with dialysis adherence and resource utilization in a cohort of dialysis patients that included enrollees of the SMILE (Symptom Management Involving End-Stage Renal Disease) Trial.
      • Weisbord S.D.
      • Mor M.K.
      • Green J.A.
      • et al.
      Comparison of symptom management strategies for pain, erectile dysfunction, and depression in patients receiving chronic hemodialysis: a cluster randomized effectiveness trial.
      • Weisbord S.D.
      • Shields A.M.
      • Mor M.K.
      • et al.
      Methodology of a randomized clinical trial of symptom management strategies in patients receiving chronic hemodialysis: the SMILE study.
      SMILE is a randomized trial in patients undergoing maintenance hemodialysis that was established to evaluate whether a nurse-led intervention decreased the number of symptoms associated with pain, sexual dysfunction, and depression. Health literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine (REALM), a 66-item list of words that participants are required to pronounce. It is defined as a score lower than 60, which is consistent with a 9th grade reading level.
      • Davis T.C.
      • Long S.W.
      • Jackson R.H.
      • et al.
      Rapid Estimate of Adult Literacy in Medicine: a shortened screening instrument.
      The authors found a prevalence of limited health literacy of 16%, which was associated with a 2.1-fold (95% confidence interval [CI], 0.10-4.17) increase in missed dialysis treatments, a 1.37-fold (95% CI, 1.01-1.86) greater risk of emergency department (ED) visits, and a 1.55-fold (95% CI, 1.03-2.34) greater risk of end-stage renal disease–associated hospitalizations. Limited health literacy was not associated with abbreviated treatments (incidence rate ratio, 1.08; 95% CI, 0.67-1.72), transplantation, or mortality. The authors concluded that in patients treated with maintenance hemodialysis, limited health literacy may be a mediator of more traditional adverse outcomes, such as ED visits or missed dialysis treatments.
      The authors readily acknowledge limitations to the study, which include assessing only print literacy/reading skills and not other skill domains involved in health literacy (eg, reading comprehension), using self-reported ED visits as an outcome, and having limited power for some analyses, such as transplantation and mortality. In addition, the study pooled participants from an ancillary prospective observational study with those enrolled in the SMILE randomized controlled trial. Although the authors state the original trial was neither powered nor designed to address health literacy, the intervention was designed to address symptom management, which could be mediated in part by health literacy. A sensitivity analysis of whether health literacy was associated with adverse outcomes in the intervention study might provide information about whether this type of intervention was useful for those with limited health literacy because an equal proportion of patients with poor health literacy were randomly assigned to each intervention group.
      • Weisbord S.D.
      • Mor M.K.
      • Green J.A.
      • et al.
      Comparison of symptom management strategies for pain, erectile dysfunction, and depression in patients receiving chronic hemodialysis: a cluster randomized effectiveness trial.
      Health literacy differs from literacy, which is defined as a set of “reading, writing, basic math, speech, and comprehensive skills” necessary for function in society.
      • Kirsch I.S.
      • Jungeblut A.
      • Jenkins L.
      • Kolstad A.
      Adult Literacy in America.
      (p3) Limited literacy (reading below a 9th-grade level) affects an estimated 90 million Americans, and of those affected, 40-44 million are functionally illiterate, while 50 million have marginal literacy skills. In the United States, literacy was assessed nationally first in 1993 by the National Adult Literacy Survey
      • Kirsch I.S.
      • Jungeblut A.
      • Jenkins L.
      • Kolstad A.
      Adult Literacy in America.
      and again in 2006 when an additional survey of 19,000 randomly sampled Americans was conducted in which literacy and health literacy levels were assessed.
      • Kutner M.
      • Greenberg E.
      • Jin Y.
      • Paulson C.
      The health literacy of America's adults: results from the 2003 National Assessment of Adult Literacy.
      From this survey, it was estimated that only 12% of Americans have adequate health literacy skills and 9 of 10 Americans have intermediate to limited health literacy skills.
      • Kutner M.
      • Greenberg E.
      • Jin Y.
      • Paulson C.
      The health literacy of America's adults: results from the 2003 National Assessment of Adult Literacy.
      Several tools have been developed to assess health literacy, ranging from surveys that use word recognition to having patients read prescriptions. For health literacy word recognition, the developed tools include the REALM, the Wide Range Achievement Test-Revised, the Medical Terminology Achievement Reading Test, and the Slosson Oral Reading Test-Revised.
      • Andrus M.R.
      • Roth M.T.
      Health literacy: a review.
      Reading comprehension tests include the Test of Functional Health Literacy in Adults (TOFHLA) and the Short TOFHLA (STOFHLA); newer tests, such as the Newest Vital Sign, use a food label for evaluation.
      • Weiss B.D.
      • Mays M.Z.
      • Martz W.
      • et al.
      Quick assessment of literacy in primary care: the newest vital sign.
      Chew et al
      • Chew L.D.
      • Bradley K.A.
      • Boyko E.J.
      Brief questions to identify patients with inadequate health literacy.
      validated a series of 3 questions to assess health literacy in a general medicine population and found that the question “How confident are you filling out medical forms by yourself?” was useful for detecting patients with inadequate health literacy.
      • Chew L.D.
      • Griffin J.M.
      • Partin M.R.
      • et al.
      Validation of screening questions for limited health literacy in a large VA outpatient population.
      Moreover, tests for health literacy do not assess numeracy, which is the ability to understand basic probability and numerical concepts, which the TOFHLA and STOFHLA evaluate and for which there are additional tests that have been developed for individuals with diabetes. However, few tests have been developed and/or validated in patients with CKD.
      One important and often overlooked issue in administering tests to assess health literacy is the effect of the tests on patients themselves. Limited literacy and poor health literacy can be associated with shame and embarrassment. Patients who have limited health literacy may have mechanisms to avoid demonstrating their limited literacy skills, such as making statements like “I forgot my reading glasses,” “I'll read through this when I get home,” or “I'd like to discuss this with my family first.”
      • Andrus M.R.
      • Roth M.T.
      Health literacy: a review.
      Health literacy assessments should be done in private when using a test such as the REALM or other tests in which patients are asked to verbalize a list of words or answer specific questions related to their ability to read. Patients should be able to feel comfortable when taking any cognitive function, depression, or health literacy test. Informal methods to assess health literacy include asking patients to read a prescription label or answer specific questions about the instructions they have received.
      • Andrus M.R.
      • Roth M.T.
      Health literacy: a review.
      • Davis T.C.
      • Michielutte R.
      • Askov E.N.
      • Williams M.V.
      • Weiss B.D.
      Practical assessment of adult literacy in health care.
      Poor health literacy is pervasive in our patient population. This is an area in which national data should be collected so that better evaluation can be done, especially given how our patients must interact with the health care system in order to gain access to renal replacement therapies such as dialysis, home modalities (peritoneal dialysis and home hemodialysis), and transplantation. The nephrology community must address health literacy on a national level and should consider developing interventions that will tackle these differences in health literacy levels. A 2009 AJKD article evaluated health literacy in nephrology,
      • Devraj R.
      • Gordon E.J.
      Health literacy and kidney disease: toward a new line of research.
      but few research articles since that publication have evaluated health literacy in CKD. The article by Green et al
      • Green J.A.
      • Mor M.K.
      • Shields A.M.
      • et al.
      Associations of health literacy with dialysis adherence and health resource utilization in patients receiving maintenance hemodialysis.
      will add to the literature on this subject.
      What can we do as nephrologists? There are national recommendations
      National Action Plan to Improve Health Literacy.
      that include making education materials that address limited health literacy, taking a “universal precautions” approach that treats everyone as if they potentially have limited health literacy, using targeted approaches to communicate with patients, making organizational changes that affect health care systems such as dialysis units and clinics to reduce limited health literacy, considering assessing health literacy at intake to a clinic or to dialysis, and considering assessing health literacy prior to CKD education (Table 1). Pharmacists have developed a tool to assess what providers know regarding health literacy prior to implementing changes in the system to target limited health literacy in patients.
      • Jacobson K.L.
      • Gazmararian J.A.
      • Kripalani S.
      • McMorris K.J.
      • Blake S.C.
      • Brach C.
      Is Our Pharmacy Meeting Patients' Needs? A Pharmacy Health Literacy Assessment Tool User's Guide.
      Nephrologists should consider simple tools to assess health literacy and we also should consider adding a health literacy screening question to national data surveys of dialysis patients, such as the Medicare 2728 form, to determine the prevalence of limited health literacy in our patients, such that useful interventions can be undertaken to improve access to difficult health information. Newer materials being developed for dialysis choices have taken this into account and may be useful in all populations, especially for patients with limited health literacy.
      • Boulware L.E.
      • Hill-Briggs F.
      • Kraus E.S.
      • et al.
      Effectiveness of educational and social worker interventions to activate patients' discussion and pursuit of preemptive living donor kidney transplantation: a randomized controlled trial.
      • Depasquale N.
      • Ephraim P.L.
      • Ameling J.
      • et al.
      Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study.
      Table 1Potential Goals and Strategies to Improve Health Literacy in Patients With Kidney Disease
      National Guidelines for Addressing HL
      • Devraj R.
      • Gordon E.J.
      Health literacy and kidney disease: toward a new line of research.
      Actionable Nephrology Areas
      Develop and disseminate health and safety information that is accurate, accessible, and actionableDevelop CKD education and modality selection tools that are accurate, accessible, and actionable by those with limited HL
      Promote changes in the health care system that improve health information, communication, informed decision making, and access to health servicesDevelop CKD decision making tools that promote HL and help patients make informed decisions for CKD treatment, including dialysis vs transplantation and dialysis modality selection
      Incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in child care and education through the university levelDevelop curricula for patients at all stages of CKD on topics such as lifestyle changes, nutrition, medication adherence, modality selection, and transplantation
      Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the communityEncourage dialysis units to have information in multiple languages common in their patient population; partner with community services to increase adult learning
      Build partnerships, develop guidance, and change policiesDevelop national policies between NKF, ASN, RPA, AAKP, AKF, and NKDEP to address limited HL in CKD patients
      Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacyEncourage PCORI and NIH grants on HL in CKD; include HL screening questions on national registries such as the USRDS
      Increase the dissemination and use of evidence-based health literacy practices and interventionsDisseminate HL information on kidney disease related education websites, journals, and newspapers
      Abbreviations: AAKP, American Association of Kidney Patients; AKF, American Kidney Fund; ASN, American Society of Nephrology; CKD, chronic kidney disease; HL, health literacy; NIH, National Institutes of Health; NKDEP, National Kidney Disease Education Program; NKF, National Kidney Foundation; PCORI, Patient Centered Outcomes Research Institute; RPA, Renal Physicians Association; USRDS, US Renal Data System.
      In the forward to the National Action Plan to Improve Health Literacy,
      National Action Plan to Improve Health Literacy.
      Assistant Secretary of Health Howard Ko wrote, “Quite simply, the responsibility is ours as health professionals to communicate in plain language. Without clear communication, we cannot expect people to adopt the healthy behaviors and recommendations that we champion.” He goes on to say that “when people receive accurate, easy to use information about a health issue, they are better able to take action to protect and promote their health and wellness.”
      National Action Plan to Improve Health Literacy.
      (piii) Improving health literacy should be a guiding principle for nephrology, just as attaining adequate Kt/V on dialysis or normalizing calcium, phosphate, and hemoglobin levels are. Although we as nephrologists cannot tackle all the problems that affect our patients, such as poverty, poor access to health care prior to the development of CKD, or poor general education, we owe it to our patients to do all we can to improve their chance of surviving the devastating consequences of kidney disease. As the article by Green et al
      • Green J.A.
      • Mor M.K.
      • Shields A.M.
      • et al.
      Associations of health literacy with dialysis adherence and health resource utilization in patients receiving maintenance hemodialysis.
      demonstrates, health literacy is associated with adverse outcomes in CKD and may contribute significantly to the overall costs of dialysis in our patients. It is time for nephrologists to become more knowledgeable regarding health literacy's adverse effects on our patients' health.

      Acknowledgements

      This material is the result of work supported by resources from the VA Puget Sound Health Care System, Seattle, WA, and represents the viewpoint of the author.
      Support: None.
      Financial Disclosure: The author declares that she has no relevant financial interests.

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