Russell L. Rothman

A heart failure self-management program for patients of all literacy levels: A randomized, controlled trial [ISRCTN11535170]

BackgroundSelf-management programs for patients with heart failure can reduce hospitalizations and mortality. However, no programs have analyzed their usefulness for patients with low literacy. We compared the efficacy of a heart failure self-management program designed for patients with low literacy versus usual care.MethodsWe performed a 12-month randomized controlled trial. From November 2001 to April 2003, we enrolled participants aged 30–80, who had heart failure and took furosemide. Intervention patients received education on self-care emphasizing daily weight measurement, diuretic dose self-adjustment, and symptom recognition and response. Picture-based educational materials, a digital scale, and scheduled telephone follow-up were provided to reinforce adherence. Control patients received a generic heart failure brochure and usual care. Primary outcomes were combined hospitalization or death, and heart failure-related quality of life.Results123 patients (64 control, 59 intervention) participated; 41% had inadequate literacy. Patients in the intervention group had a lower rate of hospitalization or death (crude incidence rate ratio (IRR) = 0.69; CI 0.4, 1.2; adjusted IRR = 0.53; CI 0.32, 0.89). This difference was larger for patients with low literacy (IRR = 0.39; CI 0.16, 0.91) than for higher literacy (IRR = 0.56; CI 0.3, 1.04), but the interaction was not statistically significant. At 12 months, more patients in the intervention group reported monitoring weights daily (79% vs. 29%, p < 0.0001). After adjusting for baseline demographic and treatment differences, we found no difference in heart failure-related quality of life at 12 months (difference = -2; CI -5, +9).ConclusionA primary care-based heart failure self-management program designed for patients with low literacy reduces the risk of hospitalizations or death.

National Standards for Diabetes Self-Management Education and Support

By the most recent estimates, 18.8 million people in the U.S. have been diagnosed with diabetes and an additional 7 million are believed to be living with undiagnosed diabetes. At the same time, 79 million people are estimated to have blood glucose levels in the range of prediabetes or categories of increased risk for diabetes. Thus, more than 100 million Americans are at risk for developing the devastating complications of diabetes (1). Diabetes self-management education (DSME) is a critical element of care for all people with diabetes and those at risk for developing the disease. It is necessary in order to prevent or delay the complications of diabetes (2–6) and has elements related to lifestyle changes that are also essential for individuals with prediabetes as part of efforts to prevent the disease (7,8). The National Standards for Diabetes Self-Management Education are designed to define quality DSME and support and to assist diabetes educators in providing evidence-based education and self-management support. The Standards are applicable to educators in solo practice as well as those in large multicenter programs—and everyone in between. There are many good models for the provision of diabetes education and support. The Standards do not endorse any one approach, but rather seek to delineate the commonalities among effective and excellent self-management education strategies. These are the standards used in the field for recognition and accreditation. They also serve as a guide for nonaccredited and nonrecognized providers and programs. Because of the dynamic nature of health care and diabetes-related research, the Standards are reviewed and revised approximately every 5 years by key stakeholders and experts within the diabetes education community. In the fall of 2011, a Task Force was jointly convened by the American Association of Diabetes Educators (AADE) and the American Diabetes Association …

Professional practice committee for the 2014 clinical practice recommendations

LINDA HAAS, PHC, RN, CDE (CHAIR) MELINDA MARYNIUK, MED, RD, CDE (CHAIR) JONI BECK, PHARMD, CDE, BC-ADM CARLA E. COX, PHD, RD, CDE, CSSD PAULINA DUKER, MPH, RN, BC-ADM, CDE LAURA EDWARDS, RN, MPA EDWIN B. FISHER, PHD LENITA HANSON, MD, CDE, FACE, FACP DANIEL KENT, PHARMD, BS, CDE LESLIE KOLB, RN, BSN, MBA SUE MCLAUGHLIN, BS, RD, CDE, CPT ERIC ORZECK, MD, FACE, CDE JOHN D. PIETTE, PHD ANDREW S. RHINEHART, MD, FACP, CDE RUSSELL ROTHMAN, MD, MPP SARA SKLAROFF DONNA TOMKY, MSN, RN, C-NP, CDE, FAADE GRETCHEN YOUSSEF, MS, RD, CDE ON BEHALF OF THE 2012 STANDARDS REVISION TASK FORCE

Low Health Literacy Associates with Increased Mortality in ESRD

Limited health literacy is common in the United States and associates with poor clinical outcomes. Little is known about the effect of health literacy in patients with advanced kidney disease. In this prospective cohort study we describe the prevalence of limited health literacy and examine its association with the risk for mortality in hemodialysis patients. We enrolled 480 incident chronic hemodialysis patients from 77 dialysis clinics between 2005 and 2007 and followed them until April 2008. Measured using the Rapid Estimate of Adult Literacy in Medicine, 32% of patients had limited (<9th grade reading level) and 68% had adequate health literacy (≥9th grade reading level). Limited health literacy was more likely in patients who were male and non-white and who had fewer years of education. Compared with adequate literacy, limited health literacy associated with a higher risk for death (HR 1.54; 95% CI 1.01 to 2.36) even after adjustment for age, sex, race, and diabetes. In summary, limited health literacy is common and associates with higher mortality in chronic hemodialysis patients. Addressing health literacy may improve survival for these patients.

Addressing Literacy and Numeracy to Improve Diabetes Care: Two Randomized Controlled Trials

OBJECTIVE Diabetic patients with lower literacy or numeracy skills are at greater risk for poor diabetes outcomes. This study evaluated the impact of providing literacy- and numeracy-sensitive diabetes care within an enhanced diabetes care program on A1C and other diabetes outcomes. RESEARCH DESIGN AND METHODS In two randomized controlled trials, we enrolled 198 adult diabetic patients with most recent A1C ≥7.0%, referred for participation in an enhanced diabetes care program. For 3 months, control patients received care from existing enhanced diabetes care programs, whereas intervention patients received enhanced programs that also addressed literacy and numeracy at each institution. Intervention providers received health communication training and used the interactive Diabetes Literacy and Numeracy Education Toolkit with patients. A1C was measured at 3 and 6 months follow-up. Secondary outcomes included self-efficacy, self-management behaviors, and treatment satisfaction. RESULTS At 3 months, both intervention and control patients had significant improvements in A1C from baseline (intervention −1.50 [95% CI −1.80 to −1.02]; control −0.80 [−1.10 to −0.30]). In adjusted analysis, there was greater improvement in A1C in the intervention group than in the control group (P = 0.03). At 6 months, there were no differences in A1C between intervention and control groups. Self-efficacy improved from baseline for both groups. No significant differences were found for self-management behaviors or satisfaction. CONCLUSIONS A literacy- and numeracy-focused diabetes care program modestly improved self-efficacy and glycemic control compared with standard enhanced diabetes care, but the difference attenuated after conclusion of the intervention.

Health Literacy Explains Racial Disparities in Diabetes Medication Adherence

Although low health literacy and suboptimal medication adherence are more prevalent in racial/ethnic minority groups than Whites, little is known about the relationship between these factors in adults with diabetes, and whether health literacy or numeracy might explain racial/ethnic disparities in diabetes medication adherence. Previous work in HIV suggests health literacy mediates racial differences in adherence to antiretroviral treatment, but no study to date has explored numeracy as a mediator of the relationship between race/ethnicity and medication adherence. This study tested whether health literacy and/or numeracy were related to diabetes medication adherence, and whether either factor explained racial differences in adherence. Using path analytic models, we explored the predicted pathways between racial status, health literacy, diabetes-related numeracy, general numeracy, and adherence to diabetes medications. After adjustment for covariates, African American race was associated with poor medication adherence (r = −0.10, p < .05). Health literacy was associated with adherence (r = .12, p < .02), but diabetes-related numeracy and general numeracy were not related to adherence. Furthermore, health literacy reduced the effect of race on adherence to nonsignificance, such that African American race was no longer directly associated with lower medication adherence (r = −0.09, p = .14). Diabetes medication adherence promotion interventions should address patient health literacy limitations.

Self-Efficacy Links Health Literacy and Numeracy to Glycemic Control

The mechanisms underlying the relationship between health literacy, numeracy, and glycemic control are unclear. We explored the role of diabetes self-efficacy in the predicted pathway linking health literacy and numeracy to glycemic control (A1C). Adults with type 1 or type 2 diabetes mellitus (N = 383) were enrolled in a cross-sectional study at primary care and diabetes clinics at three medical centers. Data collected included demographic information, health literacy, general numeracy, and A1C. Path models estimated relations among health literacy, numeracy, and diabetes self-efficacy as predictors of A1C. Health literacy (r = 0.14, p < .01) and numeracy (r = 0.17, p < .001) were each associated with greater diabetes self-efficacy, and greater diabetes self-efficacy was associated with lower A1C levels (r = −0.25, p < .001). When considered in combination, numeracy was related to diabetes self-efficacy (r = 0.13, p < .05), and the effect of health literacy on diabetes self-efficacy was reduced to non-significance (r = 0.06, p = .30). Health literacy and numeracy are each associated with greater diabetes self-efficacy, and greater diabetes self-efficacy is associated with lower A1C levels. Diabetes self-efficacy may be an important target of interventions to improve diabetes control and promote health equity related to health literacy and general numeracy skills needed for diabetes management.

An Internet-Based Program to Improve Self-Management in Adolescents With Type 1 Diabetes

OBJECTIVE To report results from YourWay, an Internet-based self-management intervention for adolescents with type 1 diabetes. RESEARCH DESIGN AND METHODS A total of 72 adolescents with type 1 diabetes, ages 13–17 years, were randomized to a usual-care-plus-Internet support or a usual-care group. The intervention was designed to enhance problem-solving barriers to self-management. A1C was obtained from medical records, and problem-solving and self-management were obtained via adolescent report. RESULTS Group differences were not statistically significant using intent-to-treat analyses. Using as-treated analyses, adolescents in the treatment condition showed statistically significant improvement in self-management (d = 0.64; P = 0.02) and important improvements in problem-solving (d = 0.30; P = 0.23) and A1C (d = −0.28; P = 0.27). Mean A1C for the intervention group remained constant (−0.01%), while the control group increased (0.33%). CONCLUSIONS This brief trial suggests that self-management support delivered through a secure website may improve self-management and offset typical decreases in adolescent glycemic control.

Perspective: The Role of Numeracy in Health Care

Numeracy, the “ability to understand and use numbers in daily life” is an important but understudied component of literacy. Numeracy-related tasks are common in health care and include understanding nutrition information, interpreting blood sugar readings and other clinical data, adjusting medications, and understanding probability in risk communication. While literacy and numeracy are strongly correlated, we have identified many patients with adequate reading ability but poor numeracy skills. Better tools to measure numeracy and more studies to assess the unique contribution of numeracy are needed. This research can contribute to developing interventions to improve outcomes for patients with poor numeracy.

Development and validation of the Diabetes Numeracy Test (DNT)

BackgroundLow literacy and numeracy skills are common. Adequate numeracy skills are crucial in the management of diabetes. Diabetes patients use numeracy skills to interpret glucose meters, administer medications, follow dietary guidelines and other tasks. Existing literacy scales may not be adequate to assess numeracy skills. This paper describes the development and psychometric properties of the Diabetes Numeracy Test (DNT), the first scale to specifically measure numeracy skills used in diabetes.MethodsThe items of the DNT were developed by an expert panel and refined using cognitive response interviews with potential respondents. The final version of the DNT (43 items) and other relevant measures were administered to a convenience sample of 398 patients with diabetes. Internal reliability was determined by the Kuder-Richardson coefficient (KR-20). An a priori hypothetical model was developed to determine construct validity. A shortened 15-item version, the DNT15, was created through split sample analysis.ResultsThe DNT had excellent internal reliability (KR-20 = 0.95). The DNT was significantly correlated (p < 0.05) with education, income, literacy and math skills, and diabetes knowledge, supporting excellent construct validity. The mean score on the DNT was 61% and took an average of 33 minutes to complete. The DNT15 also had good internal reliability (KR-20 = 0.90 and 0.89). In split sample analysis, correlations of the DNT-15 with the full DNT in both sub-samples was high (rho = 0.96 and 0.97, respectively).ConclusionThe DNT is a reliable and valid measure of diabetes related numeracy skills. An equally adequate but more time-efficient version of the DNT, the DNT15, can be used for research and clinical purposes to evaluate diabetes related numeracy.