Research Underway in Health Literacy Supported by NIH

For full descriptions, see http://www.nih.gov/icd/od/ocpl/resources/healthlitfull.htm

Adjuvant Treatment Decision-Making for Lung Cancer

Jamie Studts, PhD, University of Louisville
National Cancer Institute

Because chemotherapy will be increasingly offered to treat non-small cell lung cancer (NSCLC), this study is exploring factors that may influence treatment decision-making regarding adjuvant chemotherapy. The main goal is to examine the effects of different methods of communicating quantitative estimates of chemotherapy treatment benefits among those diagnosed with NSCLC. Researchers are also examining sociodemographic, psychological, social and health factors that influence decisions among these individuals.

Amelioration of Literacy Deficits in Prenatal Care

Debra Roter, DrPH, Johns Hopkins University
National Institute of Child Health and Human Development

To determine the effect of literacy and communication deficits on women seeking prenatal care, this study is examining the relationships among print, conceptual and oral literacy and of the communication characteristics of deficits in these areas. Researchers aim to develop an intervention designed to address literacy deficits regarding prenatal genetic testing, and to facilitate discussion about sensitive emotional and psychosocial topics. A trial will then evaluate the effect of the intervention on a variety of outcomes.

A Multifaceted Adaptive Testing Approach to Health Literacy in Older Adults

David R. Kaufman, PhD, Columbia University Health Sciences
National Institute of Nursing Research

Older adults face many challenges in today's complex health care environment, and their health literacy affects how well they can communicate with healthcare providers and make decisions about treatment options. This study aims to develop and validate a state-of-the-art computer-adaptive tool for assessing health literacy in older adults. The tool may eventually prove useful for conducting health literacy research, developing screening tools for clinicians and tailoring health education materials for older adult patients and consumers at varying levels of literacy.

An RCT to Reduce Cardiopulmonary Re-hospitalizations

Brian Jack, MD, Boston University Medical Center
National Heart, Lung and Blood Institute

In this study, researchers are exploring the effect of innovative patient-education and self-management systems on early re-hospitalization for patients with chronic cardiopulmonary disease. Researchers believe an intervention designed for low-literacy patients will reduce the rate of early re-hospitalization for patients among an urban, medically underserved patient population and that such an intervention will be especially effective for patients with low health literacy.

Assessing Health Literacy Among Transition-Age Youth

Laura P. Shone, DPH, MSW, University of Rochester
Eunice Kennedy Shriver National Institute of Child Health and Human Development

The transition from teen years to adulthood in taking care of one’s own health marks a pivotal point, when individuals must become more independent in making health care decisions. The health habits and skills needed to make these decisions are established during adolescence, and they shape medical care and overall health throughout life. This study aims to better understand how low health literacy affects 17- to 25-year-old youths. Ultimately, the findings should help researchers develop and deploy better services that ease the transition from pediatric to adult health care.

Click to Connect: Improving Health Literacy Through Internet Literacy

Kasisomayajula Viswanath, PhD, Dana-Farber Cancer Institute
National Cancer Institute

The question guiding this study is: Does improved Internet access and training used for health information lead to changes in health literacy among the socially disadvantaged? Researchers are comparing subjects provided with computers, Internet access and training with a control group without the intervention. Their goal is for data from this project to aid in the design of future information architecture that can address health literacy and "digital divide" issues specific to the needs of the socially disadvantaged.

Communicating Probabilities Through Interactive Computer Graphics

Rita Kukafka, DrPH, Columbia University
Agency for Healthcare Research and Quality

Because people of all educational levels show cognitive biases when thinking about probabilities, this study is examining whether comprehension can be improved by having users interact with animated graphical displays that create virtual experiences of probabilities. After working with lay users to develop the computer-based graphical displays, researchers aim to assess the effect of these displays on a large sample of users and explore the effects of literacy on comprehension of the different display formats.

Computer Agents to Promote Walking in Older Adults with Low Health Literacy

Rebecca A Silliman, MD, MPH, PhD, Boston University School of Medicine
National Institute on Aging

Face-to-face conversation with health providers remains one of the best methods for communicating medical information to patients with low health literacy. The investigators have already developed and successfully pilot-tested a computer technology that simulates face-to-face conversations between a health professional and patients. The new research will evaluate whether this portable computer system can increase walking exercise among low-literate older adults.

Culture and Cancer Literacy Among Immigrant Women

Lydia Buki, PhD, University of Illinois
National Cancer Institute

This study's aim is to develop a comprehensive method for assessing cultural and conceptual knowledge that can be used with low-literate immigrant populations. Focusing on health literacy assessment measures in the context of breast and cervical cancer knowledge and beliefs, researchers are studying immigrant Mexican and Guamanian/Chamorro women. Researchers hope to create an empirically-based measure to assess cultural and conceptual knowledge in immigrant groups.

Culture and Health Literacy in a Dental Clinic

Kathryn Atchison, DDS, MPH, University of California, Los Angeles
National Institute of Dental and Craniofacial Research

This study is examining the influence of a patient's dental health literacy of culture and education within the framework of a complex health care system. Researchers aim to revise a health literacy measure to include dental terminology and determine its association with knowledge, values and characteristics among culturally diverse patients; and examine differences in health care visits and in health promotion education services among patients with diverse dental health literacy and cultural backgrounds.

Development of an Oral Health Literacy Instrument

Robert Ludke, PhD, University of Cincinnati
National Institute of Dental and Craniofacial Research

The goal of this study is to begin developing an oral health literacy tool that can be used by primary and oral health care providers to assess parental/guardian oral health literacy to determine how parental literacy affects the oral health of preschool-aged children. After a two-phase development process, researchers aim to have 300 parents/guardians of children 0-5 years of age complete the oral health literacy assessment instrument and surveys and to use this data to assess the reliability and validity of the instrument.

Development of a Health Numeracy Measure

Marilyn M. Schapira, MD, MPH, Medical College of Wisconsin
National Cancer Institute

Numeracy—or the ability to understand and use basic math skills in daily life—is an important part of overall health literacy. However, reliable tools for measuring health-related numeracy have been difficult to achieve. This research project will develop and test the validity of a comprehensive instrument for measuring health numeracy, which will ultimately aid the development of patient education materials and other health communications.

Development of an Instrument to Measure Health Literacy

Lauren A. McCormack, PhD, RTI International
National Cancer Institute

The top tools for measuring health literacy actually measure only reading ability and ignore other important dimensions of literacy. As a result, studies of health literacy may not have maximized their potential, and the key findings from many studies have been inconsistent. This research project will develop a tool for obtaining better, more comprehensive measurements of overall health literacy. The tool will then be pilot-tested on individuals who have a variety of reading skills and educational levels.

Does Home Visitation Promote Maternal Health Literacy?

Sandra Smith, MPH, University of Washington
National Institute of Child Health and Human Development

Examining the influence of home visitation on maternal functional health literacy, this study focuses more specifically on disadvantaged mothers' progress toward optimal levels of functioning in the health arena. Looking at established maternal-child health visitation programs serving vulnerable families, researchers aim to develop and validate functional health literacy scales to better understand and promote the progress of mothers toward higher functioning in the health care system and in health contexts at home.

Effects of Literacy on Medication Safety in the Elderly

Grace Kuo, PharmD, Baylor University
National Institute on Aging

This study is examining the spectrum of medical errors (MEs) and adverse drug events in the elderly and how literacy affects medication safety. Researchers aim to evaluate medications used by 300 elderly patients from diverse ethnic and socioeconomic backgrounds who are seen by primary care providers in outpatient clinics, and to determine the frequency, type, severity and preventability of MEs among elderly patients who have low functional health literacy, in comparison with those with adequate literacy.

Environmental Health Literacy for Low Literate Groups

Lynn Waishwell, PhD, CHES, University of Medicine and Dentistry of New Jersey
National Institute of Environmental Health Sciences

This project's goal is to explore concepts that characterize health literacy related to environmental risk, and identify appropriate environmental health risk visual and written concepts for those with low literacy skills. After creating a framework of concepts of environmental health literacy, researchers aim to conduct focus groups with low literate members in three communities and to gain understanding of environmental health literacy concepts and methods for conveying messages to low literacy groups.

Evaluation of Clear Speech to Enhance Multimedia eHealth

Alan Vanbiervliet, PhD, University of Arkansas
National Cancer Institute

This study focuses on the characteristics of audio narration for understanding multimedia in eHealth by seniors and others, with cancer prevention as the subject matter. Researchers aim to systematically evaluate the effectiveness of Clear Speech as a narration technique for eHealth multimedia for seniors, and to show Clear Speech can be a cost-effective strategy to enhance the ability of millions of consumers to understand and process information in eHealth programs.

Examination of Oral Health Literacy in Public Health Practice

Jessica Y. Lee, DDS, MPH, PhD, University of North Carolina Chapel Hill
National Institute of Dental and Craniofacial Research

Researchers have found that low literacy has a harmful effect on general health and the use of medical services; however, much less is known about the relationship between health literacy and oral health. This study will examine how people with low dental literacy interpret information and navigate the dental health system. The researchers will evaluate whether a large comprehensive public health program can improve oral health among pregnant women and their children.

Health Literacy and Aging: A Process-Knowledge Approach

Daniel Morrow, PhD, University of Illinois Urbana-Champaign
National Institute on Aging

As the U.S. population ages, a growing number of older adults are finding they must manage their own care while facing chronic illness and cognitive decline. This study is exploring how memory and other cognitive functions affect health literacy and the ability to understand medication instructions among older adults. By the study’s end, the researchers will produce guidelines for constructing health texts for older adults who have different cognitive abilities and knowledge.

Health Literacy and Child Injury Prevention

Andrea Gielen, ScD, Johns Hopkins University
National Institute of Child Health and Human Development

Using culturally tailored computer kiosks promoting child safety in a hospital emergency room, the aim of this study is to assess low health literacy rates among inner-city parents of young children in the ER. Researchers are assessing the prevalence of low health literacy, examining the relationship between low health literacy in parents and child-injury related outcomes, and aim to determine the effect of low-income parents' literacy levels on safety information comprehension and adoption of safety behaviors.

Health Literacy and Children with Special Needs

Dolores Acevedo-Garcia, PhD, Harvard University
National Institute of Child Health and Human Development

This study's aim is to determine the knowledge and skills needed to navigate the service systems for families of children with special needs, along with the skills these families need to provide a thorough health history to clinicians. Researchers first want to understand the scope of health literacy from the perspective of parents of children with special needs, and then to develop a survey specific to these parents that will help analyze the relationships between health literacy, social support and service-related outcomes.

Health Literacy and Information in ADHD: Designing an Optimal Record

Stephen Porter, MD, MPH, Children's Hospital Boston
National Library of Medicine

Developing an electronic data entry tool that enables parents of children with Attention Deficit/Hyperactivity Disorder (ADHD) to communicate essential data to health care providers, regardless of their literacy levels, is the goal of this study. Researchers aim to implement data entry interfaces that work across all literacy levels for parental report, to assess the effect of literacy on completion of parent-reported ADHD health information and to determine the association between literacy and process-level outcomes for ADHD.

Health Literacy and Informed Consent

James Hyde, MA, Tufts University
National Institute of Child Health and Human Development

This study is evaluating the relationship between informed consent, health literacy and the documents and tools used to communicate with those who might participate in research studies. Focusing on subjects and researchers, the project's goal is to develop and test an adult-informed consent template aimed at reaching those with limited health literacy skills along with a web-based educational program intended to enhance the ability of clinical investigators to communicate with low literacy populations.

Health Literacy and Oral Health Knowledge

Mark Macek, DDS, DrPH, University of Maryland
National Institute of Dental and Craniofacial Research

This project's goal is to examine health literacy in an oral health context while including a measure of basic conceptual knowledge in the analysis. Researchers aim to develop valid instruments to assess basic conceptual knowledge of oral health and illness and of oral disease prevention and management, and to show how basic conceptual knowledge interacts with reading comprehension and numeracy and how it is associated with knowledge of oral disease prevention and management information.

Health Literacy and Patient Adherence: a Meta-Analysis

M Robin Dimatteo, PhD, University of California, Riverside
National Institute on Aging

This study focuses on the relationships between health literacy and patient adherence to recommendations from health professionals for both preventive and treatment regimens. Using a meta-analysis technique, researchers aim to search, review, summarize and integrate statistical findings of published research on this topic, examining patient adherence to recommendations on topics including medication, diet and exercise, and on prevention and disease management efforts for a variety of acute and chronic conditions.

Health Literacy and Self-Efficacy Among Low-Income Men with Prostate Cancer

Sally L. Maliski, RN, PhD, University of California, Los Angeles
National Cancer Institute

Men with prostate cancer need to communicate easily with their physicians when facing treatment decisions and managing symptoms. However, little is known about whether patients are confident in these interactions. This study will sample 100 low-income patients with prostate cancer and analyze their quality of life, health literacy and self-efficacy—or confidence interacting with doctors. The results may lay the groundwork for developing targeted interventions that meet the needs of highly vulnerable patients.

Health Literacy and Self-Management in Heart Failure

Michael Pignone, MD, MPH, University of North Carolina, Chapel Hill
National Heart, Lung and Blood Institute

This study is examining whether literacy-sensitive interventions to improve heart failure self-management skills can improve health outcomes for patients, and particularly those with inadequate literacy. Working with 600 patients with heart failure, researchers aim to determine whether a multi-session intervention that teaches essential self-care skills until patients reach behavioral goals is superior in health outcomes to a one-session educational intervention.

Health Literacy in a Panel of New Mothers

Richard Jackson, DMD, Indiana University
National Institute of Dental and Craniofacial Research

In this study, researchers are gathering preliminary data on the health literacy skills of an ethnically diverse panel of young mothers. The aim is to determine levels of health literacy, compare these levels to self-reported educational attainment and correlate the data from the test to reported behaviors of the mother and child. The project is part of a larger investigation to develop a questionnaire to identify toddlers at the highest risk of developing early childhood caries in at-risk population groups.

Health Literacy Intervention and Cancer Screening

Terry C. Davis, PhD, Louisiana State University Health Sciences Center
National Cancer Institute

Individuals with low income and low literacy have less knowledge and poorer attitudes concerning cancer screening, which places them at risk for not receiving appropriate medical care. This research project aims to test the effectiveness of a clinic-based health literacy intervention to improve initial and repeat use of colorectal and breast cancer screening. The scientists will then compare the effectiveness of this intervention with and without a specially trained nurse manager.

Health Literacy Intervention for Korean Americans with HPB

Miyong Kim, RN, PhD, FAAN, Johns Hopkins University
National Heart, Lung and Blood Institute

Working with the Korean American community, this study examines critical knowledge gaps in the field of health literacy intervention for linguistically and/or socially isolated ethnic minority groups. In a community-based trial of Korean American seniors with high blood pressure (HBP), the study focuses on determining whether or not a health literacy intervention using a community-based participatory research process will effectively promote health literacy and help to achieve better HBP outcomes.

Health Literacy, Technology Acceptance, On-line Self-Care: Understanding Teens

Deena Chisolm, PHD, Columbus Children's Research Institute
Eunice Kennedy Shriver National Institute of Child Health and Human Development

Over 3 million U.S. teens are affected by chronic diseases, and they must be prepared to manage these conditions themselves as they reach adulthood. Online systems for disease self-management may help with this challenging transition. This study will assess health literacy in adolescents and will explore how health literacy—along with computer abilities, health status, sociodemographics, computer availability and other factors—affect willingness to use online disease management systems.

Improving Health Outcomes through Computer Generation of Reader-Appropriate Texts

Qing Zeng, PhD, Harvard Medical School
National Institute of Diabetes and Digestive and Kidney Diseases

The average U.S. adult is known to read at 7th grade level, but most health instructions provided to consumers tend to require a 10th grade reading level or higher. To address this problem, the research team will develop software tools that can assess readability and automatically translate complex health materials into plain-language text. The pilot project will develop self-care materials for patients with diabetes.

Language, Literacy, Culture: Communication of Health Concepts

Douglas Brugge, PhD, Tufts University
National Cancer Institute

The goal of this study is to better understand how people with different language, culture and literacy understand key health concepts, and to lay groundwork for studies on spoken communication. To develop approaches for researching effective spoken communication of three health concepts—headache, wheezing and depression—researchers are interviewing medical experts, some of whom are bilingual, and holding focus groups in English, Spanish and Cantonese, each at low and high general literacy.

Latinos' Health Literacy, Social Support and OH-KOP

Maria Rosa Watson, DDS, DrPH, Spanish Catholic Center
National Institute of Dental and Craniofacial Research

Focusing on an inner city Hispanic community, this study is using focus groups to elicit information about oral health beliefs and preferred terminology and to further test survey instruments designed to assess the relationship between oral health knowledge and measures of health literacy and social support. The goal is for results from this investigation to improve understanding of the social, cultural and literacy factors at play in this community as it pertains to oral health practices and care seeking behaviors.

Literacy and Cognitive Skills to Understand HIV Regimens

Drenna Waldrop-Valverde, PhD, University of Miami
National Institute of Mental Health

HIV positive patients must attain high levels of adherence to antiretroviral (ARV) therapy to derive clinical benefits. In addition, no studies have taken into account cognitive impairment in understanding the effects of literacy on ARV regiment comprehension. This study is examining the impact of low prose and quantitative literacy and deficits in neurocognitive ability domains to ARV regiment instruction comprehension in a mostly ethnic minority sample of HIV-positive men and women using ARV.

Literacy and Mortality Among Elderly Persons

David Baker, MD, MPH, Northwestern University
National Institute on Aging

With this study, researchers aim to determine whether elderly persons with inadequate or marginal functional health literacy have higher mortality than persons with adequate literacy after adjusting for age, gender, race and baseline health. They also hope to determine the importance of different causal pathways between literacy and mortality, as well as the residual effect of literacy on mortality after adjusting for pathways such as adverse health behaviors, use of preventive services, income and levels of social support.

Literacy and Utilization of Maternal Depression Care

Ian Moore Bennett, MD, PhD, University of Pennsylvania
National Institute of Mental Health

This study is assessing the role of low literacy in the utilization of care with women with postpartum nonspsychotic major depression. Researchers aim to identify factors associated with accepting referral for depression care and factors associated with depression treatment continuation among women with depressive symptoms. Using quantitative and qualitative methods, the study's goal is to determine the factors that serve as obstacles to depression treatment in women with low literacy.

Maternal Health Literacy and Child Health Program Participation

Susmita Pati, MD, MPH, Children's Hospital of Philadelphia
Eunice Kennedy Shriver National Institute of Child Health and Human Development

Public programs designed to improve child health—including Medicaid and food assistance programs—are often under-enrolled. The reasons for this lack of participation are unclear, but researchers suspect that low health literacy of parents may be partly to blame. This study is examining how maternal health literacy influences participation in child health programs. The results may provide evidence to suggest changes in enrollment procedures that might help boost child participation in these programs, and ultimately improve child health.

Moderators of Health Literacy in Diabetes Management

Amy Silberbogen, PhD, Boston University
National Institute of Diabetes and Digestive and Kidney Diseases

The goal of this study is to clarify the relationship between functional health literacy (FHL) and diabetes management. The study is examining the main effects of FHL, patient self-efficacy in communicating with health care providers and psychological distress as predictors of diabetes management in a population of veterans with Type 2 diabetes. Researchers aim to determine whether self-efficacy and/or psychological distress moderate the impact of FHL in diabetes management.

Online Health Literacy of Older Adults

Dina L. Borzekowski, EdD, Johns Hopkins University
National Institute on Aging

The Internet holds great promise as a health information source for older Americans; however, little is known about online health literacy in older populations. This research project will study 500 participants of different ages to assess their strategies and success in finding accurate and useful health information online. A subset of older participants will be studied in depth to learn more about their understanding, concerns and motivations while searching online.

Pharmacist Intervention for Low Literacy in Cardiovascular Disease (PILL-CVD)

Sunil Kripalani, MD, MSc, Vanderbilt University
National Heart, Lung and Blood Institute

Many people who have recently left the hospital have difficulties managing their medications, and medication errors are common. Patients with low health literacy may find it especially difficult to understand medication instructions and dosing. This study will evaluate a literacy-focused program that provides educational assistance from pharmacists at the time of hospital discharge to people hospitalized with heart problems.

Promoting Health Literacy for Newly Prescribed Medications via the EMR

Michael S. Wolf, PhD, MPH, Northwestern University
National Cancer Institute

Label instructions on prescription medications are often difficult to understand, which can lead patients to unintentionally misuse medications. This study will develop and field-test brief, comprehendible instructions designed to better inform patients about new medicines as they are prescribed. Taking advantage of the electronic medical record (EMR), the researchers will distribute preset dosage instructions, so that all physicians will prescribe dosage, frequency and duration in the same clear and precise manner. Study results will directly inform clinical care and state and federal policies associated with drug labeling and prescribing.

Providers' Views of the Roles of Medical Interpreters

I-Ling Hsieh, PhD, University of Oklahoma
National Institute of Mental Health

It's known that using medical interpreters can improve health literacy of patients with limited English proficiency, but less is known about how their roles and are perceived. This study's goal is to assess the attitudes of health care professionals from different medical areas about working with interpreters. Researchers aim to generate a new communication theory that highlights providers' communications goals during a medical encounter and educates interpreters to respond to providers' needs more efficiently.

Reducing Adverse Self-Medication Behaviors in Older Adults with Hypertension

Patricia Neafsey, PhD, University of Connecticut
National Heart, Lung and Blood Institute

The purpose of this study is to reduce adverse self-medication practices in older adults with hypertension. Researchers aim to design a computer program for older adults and show that by using this program, APRNs will increase knowledge of drug interactions and self-efficacy for communicating with older adults about medications; and older adults will increase knowledge of potential drug interactions, reduce self-reported adverse behaviors and improve prescription medical adherence.

Refining and Standardizing Health Literacy Assessment

Elizabeth Hahn, MA, Evanston Northwestern Healthcare Research Institute
National Heart, Lung and Blood Institute

This focus of this project is to advance literacy measurement techniques by developing a computer adaptive tool to measure health literacy, by enhancing the ability to distinguish between language and literacy barriers, and by increasing understanding of associations between literacy, behaviors and outcomes. Researchers aim to develop questions for measuring reading-related literacy skills, evaluate computer-based methods and evaluate associations between literacy and patient characteristics, behaviors and health status.

Testing a Video to Improve Provider-Patient Interaction

Deborah Helitzer, ScD, University of New Mexico
National Institute of Child Health and Human Development

Patients need to be trained to engage in meaningful dialogue with providers about the development of care plans. Therefore, the aim of this study is to develop a measure to assess risk-related health literacy in a multicultural, low literacy population, and test the efficacy of a video designed to increase risk-related health literacy. The goal is for this literacy measurement tool to assess the full range of skills and knowledge needed for health literacy and address the cultural and conceptual factors that affect health literacy.

The Impact of Cultural Differences on Health Literacy & Chronic Disease Outcomes

Susan Shaw, PhD, University of Arizona
National Cancer Institute

This project's goal is to better understand the socioeconomic and cultural influences on low health literacy. Researchers are assessing variation in health literacy among native and non-native English speakers and aim to identify factors associated with health literacy, such as the language spoken at home; to explore the impact of health literacy on chronic disease outcomes; and to identify effective ways to combine qualitative and quantitative research methods to further knowledge of health literacy.