Research Underway in Health Literacy Supported by NIH

Adjuvant Treatment Decision-Making for Lung Cancer

Jamie Studts, PhD, University of Louisville
National Cancer Institute

Approximately 173,770 people are expected to be diagnosed with lung cancer in the United States in 2004, and another 160,440 are expected to die from the disease. Kentucky leads the nation in both lung cancer incidence and mortality, providing an unfortunate but unique laboratory to study this disease and its treatment. Chemotherapy has not historically played a role in adjuvant care for surgically resectable non-small cell lung cancer (NSCLC). However, recent data on platinum-based chemotherapy showed significantly increased 5-year survival from NSCLC, influencing the standard of care. While more individuals diagnosed with NSCLC will be offered adjuvant chemotherapy, experts caution that the modest benefits of chemotherapy should be weighed against the short and long-term treatment sequelae, and that the data should be used to help patients make informed choices based on their own values and preferences. Yet it is not clear that NSCLC patients have the capacity to interpret quantitative treatment benefit information. Among 120 individuals diagnosed with stages T-TTTA NSCLC, the proposed study will explore factors which may influence treatment decision-making regarding adjuvant chemotherapy. The primary aim is to examine the effects of different methods of communicating quantitative estimates of treatment benefit on adjuvant chemotherapy decisions among individuals diagnosed with NSCLC. Using an experimental design based on a hypothetical clinical scenario, this study will test the hypothesis that individuals diagnosed with NSCLC randomly assigned to receive relative risk reduction estimates will be more likely to choose adjuvant chemotherapy than individuals randomly assigned to receive absolute risk reduction information. This hypothesis is based on previous research which suggests that the method of describing treatment benefits plays an important role in treatment decisions regarding adjuvant chemotherapy. The secondary aim is to examine sociodemographic, psychological, social, and health factors which influence adjuvant chemotherapy decisions among individuals diagnosed with NSCLC. It is hypothesized that individuals who are older, more distressed, have less social support, and have poorer health status are more likely to decline adjuvant chemotherapy. With the expanding role of chemotherapy in NSCLC, it becomes even more important to understand the factors which influence treatment decisions and to identify the best methods of describing treatment benefits to patients. Only when patients understand the necessary information about the risks and benefits of each treatment option will they be able to make informed treatment decisions that are consistent with their values.

Amelioration of Literacy Deficits in Prenatal Care

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

The literacy challenges of the medical dialogue are considerable and significant; as these challenges fall within the relatively unexplored domains of conceptual and oral literacy, they have been all but ignored in the exponentially growing literacy literature. Nevertheless, it is in the oral and conceptual literacy domains that critical issues arise in face-to-face interactions with health providers. It is here that the frustration grows in the accomplishment of the most basic of patient goals- to understand and be understood. There is reason to believe that these challenges are especially evident for low-literate women seeking prenatal care. Despite evidence of persistent socioeconomic and racial disparity in prenatal, perinatal, and post-partum services utilization and health outcomes, there has been relatively little federal focus on setting goals for the amelioration of literacy and health communication deficits affecting pregnant and post-partum women and their babies (Healthy People 2010), or in designing literacy interventions to improve health outcomes for this population. It is in the first prenatal visit that significant cognitive and emotional challenges are likely to arise in the complex information needed to make an informed choice about prenatal testing and in facing the psychosocial and emotional challenges of pregnancy. Consequently, it is the first visit that is likely to set the stage forfeiture exchanges and determine the relationship that develops, and the array of attitudinal, psychological, behavioral, and health outcomes that derive from care. The specific aims of the study are: (1) To understand the relationships among print, conceptual and oral literacy dimensions and to investigate the communication characteristics of deficits in these realms; (2) To work collaboratively with low-literate women, and health literacy experts, to develop a communication intervention designed to: (a) ameliorate oral and conceptual literacy deficits related to informed choice regarding prenatal genetic testing and (b)to facilitate disclosure and discussion about sensitive emotional and psychosocial topics, and (3) to conduct a randomized trial to evaluate the effect of the intervention on a variety of outcomes including: interaction, understanding, satisfaction, prenatal care utilization, post-partum appointment keeping, antenatal and post-partum depression symptoms, and pre-term deliveries.

An RCT to Reduce Cardiopulmonary Re-hospitalizations

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

A RCT to Reduce Cardiopulmonary Re-hospitalizations Background: Limited health literacy is prevalent in America and has been identified as a cross-cutting priority area for transforming health care quality. We explore the effect of innovative patient-education and self-management systems on early re-hospitalization for patients with chronic cardiopulmonary diseases. Design: Three-armed block-randomized RCT for patients with chronic cardiopulmonary diseases in three levels of Health Literacy. Hypotheses: (1) An intervention specifically designed for patients with limited health literacy will reduce the rate of early re-hospitalization for patients with cardiopulmonary diseases among an urban, medically underserved patient population; and (2) This intervention will be especially effective in lowering the early re-hospitalization rate among those patients with low health literacy. Methods: After adapting and testing the intervention, 750 patients, admitted to the general adult medical service of Boston Medical Center will be tested with the Rapid Estimate of Adult Literacy in Medicine (<6th grade, 7th-8th grade, >9lh grade), enrolled, and block randomized into three groups (1) those receiving usual care (Control Group); (2) those receiving comprehensive hospital discharge from a case manager using up-to-date guidelines for cardiopulmonary diseases, and a written discharge plan sent to their primary care and consulting providers (Case Management Group); and (3) the same as the Case Management group plus a computer-based patient-education program before discharge specifically designed for use with subjects with limited health literacy using a embodied conversational agent and simple touch screen options and a telephone based post-discharge computerized health education and monitoring intervention (Case Management PLUS group). Outcome Measures: The primary outcome is 90-day hospital readmission. Process outcomes are the comprehensiveness of the discharge provided, adherence to disease specific up-to-date guidelines; emergency department and PCP visits, health status, and costs in each experimental group. We will evaluate the intervention in a stratified analysis to examine the effect of the intervention by literacy status.

Click to Connect: Improving Health Literacy Through Internet Literacy

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

Health Literacy is defined 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 (US DHHS, 2000). Yet there is well-documented evidence for profound inequalities in the distribution of communications services, the digital divide, and advantages accruing from it thus threatening the normative goal of developing a health literate public. The research question guiding this project is: Does improving access to the Internet, and training in how to use the Internet for health information, among the socially disadvantaged lead to changes in health literacy, and secondarily in health knowledge and beliefs about health compared to a control group in usual care condition? We will recruit 258 subjects from adult education centers in Boston, the most diverse city in New England, and randomize them to either the intervention or control conditions. 129 subjects in the intervention group will be provided with free computers and high-speed Internet at home. They will also be provided with training on how to use computers and navigate the Internet, as well as a web portal that will help in the use of the Internet for one year. Intervention will occur in three waves with 43 subjects per wave per year. Baseline and post-Intervention data .will be gathered through a telephone survey of subjects in both groups and Internet and computer use will be tracked in the Intervention group. The data from this project will provide the necessary information to design 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

The ability to understand quantitative information about probabilities is a critical component of health literacy. Although the probability of an event is only part of the multidimensional construct of perceived risk, probabilities are often used by experts and medical providers to convey risks to the public. Unfortunately, many people cannot understand or manipulate probabilities when they are presented as numbers. People of all educational levels are subject to cognitive biases when thinking about probabilities, and comprehension is further impaired by low educational level or numeracy. Among patients with low numeracy and educational level, comprehension is worst when probability information is presented in terms of probabilities or proportions, and best when it is presented through graphics that emphasize frequencies, such as grids of icons. However, not even graphical displays are successful with all audiences, and much previous research on them has been atheoretical. New research in cognitive psychology demonstrates that cognitive biases in probabilistic reasoning can be minimized or altered when probabilities are learned through experience (such as by drawing cards from a deck) rather than described as percentages (such as being told that 23 percent of the cards are face cards). Thus, we anticipate that we can improve comprehension and alter the effect on perceived risk by animating graphical displays to create virtual experiences of probabilities, and by encouraging users to interact with the displays and manipulate them. This study will (a) use qualitative methods with lay users to develop new computer-based graphical displays that incorporate animation and user interaction, (b) assess the effect of these displays in quantitative research on a large heterogeneous sample of users, and (c) explore the effects of numeracy and health literacy on comprehension of different display formats. The primary outcomes will be choice decisions between different risk scenarios, perceived risk, and quantitative comprehension. User satisfaction and interface usability will also be assessed. To enroll a diverse sample, we will recruit in both an on-line environment and from the Harlem Health Promotion Center, a national center for health promotion research. The interactive displays developed in this project have the potential to be applied to more comprehensive programs for health literacy education, tailored health and risk communication, shared medical decision-making, and patient decision support.

Culture and Cancer Literacy Among Immigrant Women

Lydia Buki, PhD, University of Illinois
National Cancer Institute

Health literacy has emerged as an important construct because its four components, cultural and conceptual knowledge, listening and speaking (oral literacy), writing and reading (print literacy) and numeracy affect the health outcomes of individuals. Yet, there is no consensus about the most appropriate way to measure health literacy. The two most widely used health literacy measures, REALM and TOFHLA, have been in used with immigrant populations to measure print literacy (REALM and TOFHLA) and numeracy (TOFHLA), only two of the four health literacy components. Cultural and conceptual knowledge and oral literacy are not measured, limiting our ability to comprehensively assess health literacy across populations that are at most risk for low health literacy. Therefore, the current study is the first step in a long-term research agenda designed to address these methodological shortcomings. We propose to develop a comprehensive method for assessment of cultural and conceptual cancer knowledge that can be used with immigrant, older, and low SES, low literate populations. Moreover, we envision that this assessment will allow for the measurement of cultural and conceptual elements that are common and specific across immigrant populations. The two populations we will study are (a) immigrant Mexican women in the state of Illinois, and (b) immigrant Guamanian/Chamorro women in the state of Hawaii. Although we hope to extend this work to other health conditions, in this exploratory study we focus upon development and testing of health literacy assessment measures in the context of breast and cervical cancer knowledge and beliefs. We also propose to contribute to the larger literature by providing a model for the use of mixed methodologies to develop a sound health literacy assessment method. First, we will seek to understand the experiences of immigrant Mexican and Chamorro women with low health literacy. Second, with input from experts and community women, we will determine the adequacy of items to be included in a new measure. Third, we will obtain feedback from immigrant women to evaluate and revise the items, and narrow the set of items to create an empirically-based measure to assess cultural and conceptual knowledge for each group; this measure will incorporate common and specific knowledge elements for each population. Psychometrics will be obtained in a future R01.

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 research is designed to examine the influence on a patient's dental health literacy of culture and education or knowledge within the framework of a complex health care system. Health literacy is one of four information domains in a social review that health care providers should conduct in their general assessment of a patient. Low literacy is associated with poorer health status, low rates of compliance with complicated medication regimens, high hospitalization rates, overuse of emergency services, and under-use of preventive health services. Culture is linked to health literacy by the values and language barriers that shape the perception and processing of health information. A broad conceptualization of the education system includes ongoing adult education and experiences. Health system factors include barriers to access dental care and number and type of health care visits and services. Three specific aims are proposed: 1) Revise the Rapid Estimate of Adult Literacy in Medicine (REALM) to incorporate dental terminology (REALM-D) and determine its association with knowledge, health values, and patient characteristics among culturally diverse patients; 2) Examine differences in numbers of urgent / emergency visits versus preventive/comprehensive visits by dental health literacy levels; and 3) Examine differences in the range of health promotion education services requested and received among patients with varied dental health literacy levels after controlling for cultural background (age, sex, race/ethnicity, preferred language). The goal of this feasibility study is two-pronged: to modify and expand a measure of dental health literacy, and to develop a process for prospectively utilizing an electronic patient record (EPR) to track patient interaction with the dental health care system and acquisition of oral health services.

Development of an Oral Health Literacy Instrument

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

Early childhood caries (ECC) is a major health problem that has a disproportionate effect on minority and disadvantaged children. An underlying contributor to this problem is parental behaviors that appear to be inconsistent with good oral health literacy. The purpose of this study is to begin the process of developing and evaluating an oral health literacy instrument that can be used by primary medical care and oral health care providers to assess the degree to which parents/guardians have the capacity to obtain, process, and understand basic oral health information and services needed to make appropriate decisions that have a direct impact on the oral health of their preschool children. The development of an initial version of the oral health literacy assessment instrument will be in three phases. Phase I will consist of defining the construct of oral health literacy via a Delphi process conducted with 8-10 identified oral health experts. Phase II will consist of constructing a draft assessment instrument. Phase III will employ in-depth cognitive interviewing of 8-10 parents/guardians from each of four socio-culturally distinct population groups (African American, Appalachian, Hispanic/Latino, and white, non-Appalachian, non-Hispanic/Latino) to identify potential problems that might lead to survey response error. The instrument will then be pilot-tested in two pediatric safety-net facilities that have implemented a program of oral health screening and fluoride varnish application for preschool children. Approximately 300 parents/guardians of children 0-5 years of age who provide informed consent will be asked to complete the oral health literacy assessment instrument and four additional brief surveys. Data from these surveys as well as data collected on the oral health status of children as part of the oral health screening/fluoride varnish program will be used in various psychometric analyses to assess the reliability and validity of the instrument.

Does Home Visitation Promote Maternal Health Literacy?

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

Pregnancy and early parenting is a time characterized by high need for health information, high readiness to learn and change, and first-time use of significant health services; a time when both the negative and positive effects of mothers' literacy skills and functional health literacy pass to their children with lifelong consequences. The purpose of this project is to examine the influence - and the mechanisms of influence - of home visitation on maternal functional health literacy, that is, on disadvantaged mothers' progress toward optimal levels of functioning in the health arena. Across the country, established maternal-child health home visitation programs serve vulnerable families who lack resources, social supports and literacy skills to function well in the health arena during pregnancy and early parenting. These home visitation programs could prove to be an effective, efficient channel to promote functional health literacy among the primary health decision makers in growing families at risk. Instruments that can measure the function in functional health literacy are urgently needed to improve understanding of health literacy beyond the current focus on reading ability. This project develops and validates functional health literacy scales to better understand and promote mothers' progress toward higher functioning in the healthcare 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

The elderly account for one-third of prescription drug consumption in the United States and are at greater risk for medication errors (MEs) and adverse drug events (ADEs). They are also more likely to have low health literacy that increases the possibility of medication-related problems. Data on MEs and ADEs are collected predominantly in hospitals where it is easier to monitor such errors and to identify patients experiencing medication-related problems. This approach is not optimal in the United States, because here most medications are prescribed in the outpatient setting by primary care physicians. The proposed study will describe the spectrum of MEs and ADEs in the elderly and how health literacy affects medication safety. The aim of this application is to determine the frequency, type, severity, and preventability of MEs among elderly primary care patients who have low (inadequate and marginal) functional health literacy (FHL) vs. elderly primary care patients who have adequate FHL. Furthermore, we will conduct cognitive interviews to understand why MEs may have occurred. The study will be conducted in a primary care research network, the Southern Primary care Urban Research Network (SPUR-NetSM), which is located in Houston, Texas. In this application, we propose to evaluate medications used by 300 elderly patients from diverse ethnic and socioeconomic backgrounds who are seen by primary care providers in outpatient clinics. This is a unique study, because our main outcome measure is ME as it occurs in primary care clinics;. Moreover, we will generate findings and compare types and rates of MEs and ADEs among elderly patients who have different ethnicity, socioeconomic status, and literacy. Findings from this study will be used to design interventions for medication-safety-promotion education programs to be implemented and evaluated within primary care clinics. The proposed research is innovative, because it will provide an understanding of MEs and ADEs in a diverse primary care population and the association of health literacy with such errors. The outcomes of the proposed research will be significant, because millions of the American elderly will receive improved quality of care.

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

The goal of this research project, Environmental Health Literacy for Low Literate Groups, is to explore and determine concepts that characterize health literacy related to environmental risk and to identify appropriate environmental health risk visual and written concepts for individuals with low literacy skills. An innovative method to investigate emerging concepts will be employed using an adapted Mental Models approach (Morgan et al, 2002). Using open-ended interviews of 20 environmental experts and 20 risk communication experts, the project team will create a model of concepts that constitute environmental health literacy. Using these frameworks as a basis, six focus groups with low literate members will be conducted in three communities, in partnership with local community organizations. Focus group recruitment will include an assessment of literacy level. The purpose of the focus groups is to explore perceptions and definitions of identified environmental literacy concepts and assess comprehension of currently used messages and images in environmental risk communiques. Pro-type messages and images will be developed and pretested with three additional focus groups with low literacy members. Results will provide understanding of essential concepts for environmental risk literacy, and provide useful methods and messages for conveying messages to low literacy groups. These groups often are more at risk for environmental exposure than groups with higher literacy levels. The testing of an innovative approach to developing risk messages and methods is an additional benefit of this study. The University of Medicine and Dentistry of New Jersey- School of Public Health (UMDNJ-SPH), including the Resource Center of the Public Education and Risk Communication (PERC) Division, Environmental and Occupational Health Science Institute (EOHSI) will direct this two year research project.

Evaluation of Clear Speech to Enhance Multimedia eHealth

Alan Vanbiervliet, PhD, University of Arkansas
National Cancer Institute

This project focuses on the characteristics of audio narration for understanding multimedia in eHealth by seniors and others, using cancer prevention as the subject matter. Multimedia is an increasingly popular method for presenting cancer and other health information on the web and via CD/DVD. However, there is virtually no health literacy research on effective strategies for the design of multimedia. For example, in the 187 design guidelines published in NIH's Research-Based Web Design and Usability Guidelines, multimedia is briefly mentioned in just 4 guidelines. This project will address this significant yet understudied area of health literacy. Segments of the population are affected differentially by a multimedia presentation. Many older adults experience difficulties understanding speech due to changes in hearing sensitivity and cognition that affect speech processing. The conversational style of speech that is typically used in eHealth multimedia is very difficult for many persons to understand. Thus information that is critical to health decision processes may be missed. The speech produced when a speaker intentionally tries to improve intelligibility by speaking slowly and clearly, but without exaggeration, is called "Clear Speech". Clear Speech style has been repeatedly shown to enhance intelligibility of speech in numerous studies over the past 20 years. The goal of this project is to systematically evaluate the effectiveness of Clear Speech as a narration technique for eHealth multimedia for seniors and to disseminate the results through guidelines. The overall design of the study will be a mixed factorial with age as a between-subject variable and performance on tasks as a within-subject variable. The study will be divided into intelligibility, comprehension, retention and preference testing. 40 senior and 20 younger adults will participate in the project. Clear Speech narration is expected to be proven to be a cost-effective strategy to significantly enhance the ability of millions of consumers to obtain, process, and understand health information presented in eHealth programs.

Health Literacy and Child Injury Prevention

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

Injury is the leading cause of death for children and thousands of nonfatal injuries are treated in emergency departments every year. Children living in low income urban environments are at especially high risk for preventable injuries. There is promising evidence that pediatric emergency departments can provide an important opportunity for providing injury prevention counseling. We are currently completing an NICHD- funded intervention trial of a culturally tailored, computer kiosk intervention promoting child safety in the Johns Hopkins Pediatric Emergency Department (FED). The families served in this FED are from a low income, urban, predominantly African American population. Preliminary data using the REALM was collected in the RED to inform the development of our intervention. Among 59 parents, 28 percent read below the 9th grade level, and 14 percent at or below the 6th grade level. We have continued to collect REALM data from parents enrolled in the intervention trial, although questions about literacy were not included in the original study aims. Parents (or legal guardians) of young children are being enrolled and randomly assigned to receive the culturally tailored, personalized child safety feedback report or a non-tailored child health feedback report. Outcome assessments of parents' safety knowledge and behaviors will be assessed at two follow-up points by interview with a random sample selected for home observations to confirm self-reported safety practices. This proposed RO3 research is a revised application. The aims are to: 1) assess the prevalence of low health literacy among a large sample of inner city parents of young children seen in a pediatric emergency department; 2) examine the relationship between low health literacy in parents and child injury related outcomes, including knowledge of safety information and adoption of safety behaviors; and 3) examine whether and to what extent low income parents' literacy levels moderate the impact of a culturally tailored computer kiosk intervention on comprehension of safety information and adoption of safety behaviors. Results from this study can be used to: 1) suggest ways in which FED prevention interventions for low literacy populations can be strengthened, and 2) prepare an RO1 application to extend our program of research on adult literacy and child health and safety. We believe communication strategies that effectively incorporate issues of culture and literacy can help reduce the disparities in child injury experiences, although virtually no scholarly work has been undertaken on this topic. We propose to efficiently begin addressing this gap by conducting an innovative secondary data analysis, the results of which will be immediately useful to prevention programs and will form the basis for future research on literacy and child health and safety.

Health Literacy and Children with Special Needs

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

The proposed study will include expanding the domain of health literacy to include its role in the optimal development of children with special health care needs. We will focus on two types of health literacy in the special needs context: (a) the specific knowledge and skills needed to interact with and navigate the multiple service systems in which these children and their families are served (e.g., special education, pediatrics, health insurance, social welfare); (b) and the skills needed to provide a thorough health/developmental history to clinicians. Specifically, the aims of this pilot study are: (1)To understand, using qualitative methods, the nature and scope of health literacy from the perspective of English- and Spanish-speaking parents of children with special health care needs, and to identify commonalities and differences in the nature and extent of health literacy-related needs and resources (i.e. social support) within this diverse population of families; (2)To develop a survey specific to parents of children with special needs that will allow analysis of the relationship between health literacy, social support, and key service-related outcomes in the health and educational service sectors, and to conduct preliminary analyses (using a pilot sample of English- and Spanish-speaking parents) of the following three hypotheses: I. Health literacy is (independently) positively associated with key service-related outcomes, e.g. access, care coordination II. Social support is (independently) positively associated with key service-related outcomes, e.g. access, care coordination. III. Level of social support moderates the relationship between health literacy and service-related outcomes.

Health Literacy and Information Management in ADHD: Designing an Optimal Record

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

Health literacy is an integral part of the pathway for the successful transfer of information between patients and providers. Parents of children with Attention Deficit/ Hyperactivity Disorder (ADHD) play an essential role in chronic care as they offer critical information to providers that drives appropriate education and disease management. We propose the development and evaluation of an electronic data entry tool that enables parents to communicate data essential to treatment of their children, regardless of their own literacy skills. The research plan addresses questions central to patient-centered information management: 1) how should a computer-based, personally controlled health record (PCHR) look and function to effectively gather data directly from patients, and, 2) how does health literacy influence parents' report of data on ADHD and the process-level events that result from parent-provider communication? The following specific aims organize the proposal: Aim 1. To identify and implement key features of data entry interfaces that create maximal usability across literacy levels for parental report on ADHD-related information, Aim 2. To assess the effect of health literacy on successful completion of parent-reported ADHD health information in both paper-based and PCHR formats, and Aim 3. To determine the association between health literacy and process-level outcomes for ADHD that stem from parent-provider exchange of information. Formative research methods during PCHR development will use one on one cognitive interviews, focus groups, and structured usability testing. The formal evaluation will study a diverse cohort of parents in a randomized trial of data entry (paper versus PCHR) for ADHD-specific information. Primary care records for children of this cohort will be analyzed for the prior 12 month period. Both a retrospective examination of documented ADHD processes of care and a prospective evaluation of the utility of data from the PCHR will occur. Literacy level is a primary variable of interest throughout the evaluation. This work addresses two health information technology goals of the Department of Health and Human Services: connectivity that provides clinicians with up-to-date patient data and the promotion of patient involvement in care. Findings will provide a usable and useful technology product that overcomes literacy related barriers and thereby improves care for the most common pediatric mental health disorder.

Health Literacy and Informed Consent

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

There is a growing body of literature showing that subjects who consent to participate in research studies do so without the opportunity to make truly informed decisions. It may also be that potential research subjects may refuse participation in clinical research studies because they are unable to obtain satisfactory answers to questions and concerns. One of the important and documented barriers to obtaining informed consent from subjects is the disparity between the health literacy skills and abilities of subjects and the complexity of the language, both written and oral, used to communicate with them. Data from the National Adult Literacy Survey (1993) suggest that as many of 90 million Americans, 47% of the adult population, may have difficulty accessing and using health information. We propose a pilot intervention study to address the disparity between the health literacy level of subjects, clinical researchers, and the documents and tools that they use to communicate with one another. While previous studies have focused on either subjects or researchers independently, the proposed approach addresses both. We will develop and test an adult informed consent template, fine-tuned to reach those with limited health literacy skills, in conjunction with a web-based educational program intended to enhance the ability of clinical investigators to communicate with low literacy populations. Because the consent process also serves the dual purpose of protecting the institution and researchers from legal liability, we have taken special care to honor this dual function in the design of our intervention. We will evaluate the effectiveness of this approach using surrogate research subjects evaluating their response to a mock research study. Outcome measures include level of comprehension, satisfaction and rate of subject accrual. The research team includes a multi-disciplinary group of clinical researchers, health communication, legal and public health scholars. The work will take two years to complete.

Health Literacy and Oral Health Knowledge

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

Health literacy is defined as a combination of attributes that can explain and predict one's ability to access, understand, and apply health information. Approximately 90 million American adults lack these necessary skills. To date, studies of health literacy have used tests of reading recognition or tests of reading comprehension and numeracy to categorize health literacy status. No studies have included writing, speaking, or listening skills, and none have included cultural factors or basic conceptual knowledge - all thought to contribute to health literacy. The lack of basic conceptual knowledge data is particularly important because knowing how to prevent and manage disease depends not only on one's reading comprehension and numeracy skills, but also on one's ability to place that information in a meaningful context. Researchers hypothesize that oral health disparities are influenced by health literacy, although little research has been done to support that position. The overall goal of the proposed research project is to study health literacy in an oral health context while including a measure of basic conceptual knowledge in the analysis. The specific aims of the proposed research project are to: 1) develop a valid instrument to assess basic conceptual knowledge of oral health and illness; 2) develop a valid instrument to assess knowledge of oral disease prevention and management; and 3) determine to what extent basic conceptual knowledge exists as an effect modifier of the association between reading comprehension and numeracy and knowledge of oral disease prevention and management. The two knowledge instruments will be developed with the guidance of an expert panel and tested for reliability and validity during pilot testing. Associations between reading comprehension/numeracy and knowledge of oral disease prevention and management will be tested among a probability sample of adults from the Baltimore metropolitan area. Public health relevance: Successful completion will show how basic conceptual knowledge interacts with reading comprehension/numeracy, and how it is associated with knowledge of oral disease prevention and management information. Deterrmining this association will advance understanding of health literacy in oral health research and will guide the development of appropriate health information for persons with all levels of health literacy. It is anticipated that these results will ultimately improve oral health and eliminate disparities in the United States.

Health Literacy and Patient Adherence: a Meta-Analysis

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

Low levels of patient health literacy may contribute to patients' difficulties following preventive and treatment , leading to poor adherence and ultimately to poor health outcomes. Patient non-adherence (also called noncompliance) is a widespread problem in medical care, limiting opportunities to prevent the onset and/or progression of serious disease. The goal of this study is to employ the techniques of meta-analysis to systematically search, review, summarize, and integrate the statistical findings of all published research from 1948 through 2007 on the relationship between patient adherence and health literacy. This work will build on the Principal Investigator's existing databases of the adherence and health communication literatures from 1948-98. Calculation of multiple, conceptually driven meta-analyses will involve all health literacy conceptual definitions and measurement strategies in both observational and intervention studies. This work will examine the relationships between health literacy and adherence to recommendations from all health professionals (e.g., physicians, nurses) for both preventive and treatment , including medication, diet, exercise, and all specific prevention and disease management efforts for a wide variety of acute and chronic conditions. These meta-analyses will examine the effects of moderators of the health literacy- adherence relationship, including patient characteristics (gender, ethnicity, age, education, economic status, and underserved status), disease conditions and treatment , contexts of care, and research methodologies. This work will also examine trends over time in the development and evolution of substantive and methodological issues in health literacy and patient adherence.

Health Literacy in a Panel of New Mothers

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

The purpose of this study is to gather preliminary data concerning the health literacy skills of an ethnically diverse panel of young mothers. These parents are being recruited as part of a larger investigation to develop an innovative self-administered structured caries risk questionnaire to identify toddlers (18-36 months of age) at the highest risk of developing early childhood caries, focusing on at-risk population groups (e.g., African American and Hispanic), and to test which set of questions are the strongest predictors of very early caries development over a 12-month period, using very sensitive caries detection systems. In order to perform the investigation 400 mothers of toddlers will be invited to participate. The specific aims of this proposed study are to: 1. Administer the S-TOFHLA to 300-400 primary caregivers as part of the on-going caries risk study. 2. Determine the level of health literacy and compare the measurement of health literacy to self-reported educational attainment from the caries risk study. 3. Correlate data derived from the S-TOFHLA to reported behaviors of the mother and child derived from a novel health perception questionnaire being developed as part of the caries risk study.

Health Literacy and Self-Management in Heart Failure

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

Inadequate health literacy skills are common and associated with poor health outcomes. Heart failure is an important cause of morbidity and mortality. Heart failure disease management programs that focus on building self-management skills can reduce rates of hospitalization. Our pilot randomized trial suggests that patients with inadequate literacy may derive greater benefit from such programs than patients with adequate literacy. We aim to examine, in a multi-site randomized trial, whether a literacy-sensitive intervention to improve heart failure self-management skills can improve health outcomes for all patients, and particularly those with inadequate literacy. We will conduct a multi-site randomized trial of 600 patients with heart failure to determine whether a literacy-sensitive, multi-session intervention that teaches essential self-care skills until patients reach behavioral goals (Teach to Goal) is superior to a Brief Educational Intervention (BEI) consisting of a single educational session, for the outcomes of incidence of hospitalization or death and heart failure-related quality of life over 12 months. We will also examine differences in the proportion of patients achieving appropriate HF-related self-care knowledge and behaviors, and will examine the effect of TTG for patients with adequate and inadequate literacy separately.

Health Literacy Intervention for Korean Americans with HPB

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

Despite the tremendous progress that has been made in improving heart health in the US population during the last decade, many ethnic minority populations are still experiencing significant health disparity gaps. In particular, low health literacy in populations with limited English skills has undoubtedly hindered the development of effective strategies for improving health outcomes and reducing health disparity gaps. This research application is formulated in response to the widely recognized need for health literacy promoting intervention (NIH Program Announcement: PAR-04-16: Understanding and Promoting Health Literacy). This research effort is designed to answer research questions that address critical knowledge gaps in the field of health literacy intervention for linguistically and/or socially isolated ethnic minority communities, using the Korean American community as an example. These questions include whether or not: 1) a health literacy-focused intervention using a community-based participatory research (CBPR) process will be effective in promoting health literacy and achieving better HBP outcomes in a community that is known as one of the "hard-to reach" populations for clinical research; and (2) an intervention delivered by lay health workers (i.e., community health workers) teamed with registered nurses will be acceptable and effective in such a community. The proposed study is a community-based, randomized clinical trial with delayed intervention and a longitudinal repeated measures design that will allow us to determine the effectiveness of the proposed health literacy-focused HBP intervention. A total of 360 Korean American seniors will participate in this study over two- year period. While the focus of this research project is literacy promotion and HBP control in Korean American immigrant seniors, it is our belief that the core components of this intervention's principles and methodology can provide meaningful insights to other researchers who are seeking to develop effective, culturally sensitive health literacy programs to meet the needs of socially and/or linguistically isolated minority groups with HBP throughout the U.S.

Language, Literacy, Culture: Communication of Health Concepts

Douglas Brugge, PhD, Tufts University
National Cancer Institute

Spoken communication of key health concepts for many diseases is critical to prevention, screening and clinical management. This communication is made more difficult when words get in the way. Health literacy is affected by general literacy, language and cultural interpretation. Very little is known about maximizing spoken communication of health concepts across these potential barriers. Because of the lack of knowledge, there is a need for first stage studies that lay the basis for future research. We propose a study that will develop methodological approaches to the study of effective spoken communication of three key health concepts: headache, wheezing, and depression. 1) Our primary hypothesis is that different language groups and groups with different levels of general literacy will have different levels of health literacy which will, in turn, be reflected in their understanding of spoken key health concepts. 2) Further, we hypothesize that we will be able to develop from focus group data a conceptual framework that can be applied to future intervention studies designed to overcome spoken health communication barriers. The first phase of the study will consist of key informant interviews with medical experts, some of whom are bilingual in Spanish or Cantonese. In the second phase, we will hold 12 focus groups of 8-10 persons in English, Spanish and Cantonese, each at low and high general literacy. We will use highly skilled focus group moderators from Erlich Transcultural Consultants who have many years of experience leading focus groups in each language. The focus groups will be held in a new state-of-the-art focus group facility with extensive technical capability, including an observation room in which the project leaders will observe the focus groups in the presence of a simultaneous translator. Focus groups will be video recorded and the resulting record transcribed and translated. We will use data immersion to analyze the focus groups. This will include a systematic content analysis, a thematic analysis and a logical analysis. Our goal is to develop sufficient understanding of how persons with different language, culture and general literacy understand key health concepts so that an intervention study (R01) aimed at improving spoken health communication can be developed.

Latinos' Health Literacy, Social Support, and OH-KOP

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

It has been suggested that low health literacy is associated with adverse health outcomes, and reduced access to needed services. Latinos' health behaviors and attitudes are known to be influenced by social and cultural factors. The prevalence of low health literacy of recent Latino immigrants in the Washington D.C. area is unknown. Further, the impact of health literacy levels in the oral health knowledge, opinions, and practices among mostly underserved Latinos is unknown. The proposed investigation will concentrate in using focus group methodology to elicit information about beliefs, viewpoints, preferred terminology and to further detail and test survey instruments designed to assess the relationship between oral health knowledge and measures of health literacy and of social support, in members of an Inner City Hispanic Community in Mount Pleasant, Washington D.C. The instruments that will be assessed and further detailed include: A previously developed oral health knowledge and practices (KOP) survey instrument, developed in the Inner City Hispanic Community of Mount Pleasant in Washington D.C.; the SAHLSA instrument -a Spanish Health Literacy Assessment Tool, and a social support survey instrument, both previously tested and validated with patients at the University of North Carolina; and Health literacy measures using REALM (in English). The results of this qualitative investigation will help improve our understanding of the social, cultural and literacy factors at play in this community as it pertains to oral health practices and care seeking behaviors, and will assist in developing and pre-testing instruments designed to assess the association of oral health knowledge and measures of health literacy considering social and cultural factors in members of an Inner City Hispanic Community. Ultimately, these instruments will serve to target oral health promotion and primary prevention efforts for Latino populations.

Literacy & Cognitive Skills to Understand HIV Regimens

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

To derive the clinical benefits of antiretroviral (ARV) therapy, HIV+ patients must attain high levels of adherence (90-95 percent). Our work with HIV/AIDS patients has indicated that errors in daily ARV dosing may occur because patients did not understand their dosing instructions. Therefore, if patients are not able to understand medication instructions at the outset of treatment, then they cannot be expected to accurately follow those regimens over time. Functional health literacy refers to the ability to read and comprehend prescription bottles, appointment slips and other materials that ensure successful functioning in the patient role (prose literacy). It also includes using mathematical skills to plan the number and timing of doses each day/week and to anticipate refills (quantitative literacy). Although low prose literacy, age and education have been associated with poor understanding of ARV dosing instructions in HIV/AIDS patients, the role of quantitative literacy has been largely unstudied in this population. Furthermore, cognitive impairment is known to occur as HIV disease progresses and deficits in executive functions (i.e., problem-solving and reasoning) and learning/memory have been linked to failure to comprehend ARV regimen instructions. No studies on the effects of literacy on ARV regimen comprehension to date have accounted for cognitive impairment. Because a substantial proportion of HIV infected patients are likely to be cognitively impaired, the influence of such impairment on understanding of ARV medication regimens must be considered. The proposed cross-sectional study will assess the relation of low prose literacy, low quantitative literacy and deficits in specific neurocognitive ability domains to poor comprehension of ARV regimen instructions in a mostly ethnic minority sample of 200 ARV naTve HIV+ men and women. Initial comprehension of ARV regimens is essential for continued adherence. Identification of factors related to poor comprehension of ARV medication instructions is a necessary prerequisite for developing interventions to improve it.

Literacy and Mortality Among Elderly Persons

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

Low literacy is highly prevalent in the United States. According to the U.S. Department of Education's National Adult Literacy Survey (NALS) of 1992, 21 percent of adults possess skills in the lowest level of prose, document, and quantitative literacy. Another 27 percent of adults fall under the second lowest level of literacy proficiency and may be hindered in routine daily activities. The prevalence of low literacy increases dramatically with age: 44 percent of U.S. adults age 65 and older had level 1 reading skills on the NALS. Individuals with inadequate literacy have worse health in cross sectional studies and higher hospitalization rates in prospective studies. No previous study has examined whether literacy independently predicts death. In addition, the mechanisms by which literacy affects health outcomes remain unclear. The primary aims of this study are: 1) 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/ethnicity, and baseline health and chronic conditions, and 2) To determine the importance of different causal pathways between literacy and mortality and the residual effect of literacy on mortality after adjusting for all pathways examined, including a) adverse health behaviors (smoking, alcohol use, obesity, and seat belt use), b) under use of preventive services (mammography, Papanicolau smear, and pneumococcal and influenza vaccination), c) occupation and income, and d) lower levels of social support. Data from a cohort of 3260 community dwelling elderly who completed a one hour in-home interview that measured health behaviors, health care use, physical and mental health, functional health literacy (Short Test of Functional Health Literacy in Adults) and cognitive functioning (Mini Mental Status Examination) will be linked to the National Death Index to track mortality. Cox proportional hazards models will be used to determine the independent association between literacy and mortality. The pathways described above will be sequentially added to the models to determine the change in the beta coefficients for literacy to determine the degree to which each pathway mediates the relationship between literacy and mortality.

Literacy and Utilization of Maternal Depression Care

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

Nonpsychotic major depression (MOD) occurs in 10-20 percent of women within 6 months of delivery with higher rates seen following preterm birth. Patient factors which reduce participation in care for MOD are major barriers to the delivery of effective depression treatments. Adults with low literacy have higher risk of depressive symptomatology and less utilization of a variety of health care services 20-37 percent of women in populations most at risk for maternal health disparities have low literacy (< 6th grade). The health literacy construct, the capacity to access information needed for health decisions, has been proposed as a mediator of the association between low literacy and low health care service use. Assessing the role of low literacy in the utilization of care for MOD identified postpartum may allow interventions that would reduce barriers to treatment for this vulnerable population. This application outlines a mixed methods study (R03) in response to PAR-04-117, in which qualitative methods will be added to an ongoing randomized controlled trial to treat risk factors for repeat preterm birth (n=1420). Participants who are diagnosed with DSM-IV MOD following an early preterm birth (<34 weeks EGA) will be offered a choice of free treatments (psychotherapy, antidepressant medication, or a combination of the two). The primary aims of this investigation of women with depression and low literacy (< 6th grade, n=117) are to: 1) Identify factors associated with accepting versus declining referral for depression care among women with high depressive symptomatology (CES-D 22); 2) Identify factors associated with accepting versus declining any of the active treatments for depression offered among women with DSM-IV MOD; and 3) ldentify factors associated with depression treatment continuation versus discontinuation among women with DSM-IV MOD. The proposed study will take advantage of extensive quantitative data collected in the parent study which will be linked to qualitative analyses of transcripts from semi-structured interviews (n=60) and clinical interviews (n=40) The qualitative methods will greatly enhance the quantitative assessments, provide an opportunity to clarify inconsistencies in results, and an opportunity to uncover novel factors linking health literacy and depression treatment utilization. This study represents a unique and cost effective opportunity to study patient factors which are obstacles to depression treatment in women with low literacy and inform future interventions.

Moderators of Health Literacy in Diabetes Management

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

Functional health literacy (FHL), the ability to perform basic reading and numeracy tasks in a health care context, is associated with knowledge of chronic disease management and disease outcomes in individuals who have been diagnosed with Type 2 diabetes. The overarching objective of the proposed pilot study is to clarify the relationship between FHL and diabetes management by examining two potential moderating factors: patient self-efficacy in communicating with health care providers and patient psychological distress. The primary aim of this study is to examine 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 diagnosed with Type 2 diabetes. The secondary aim is to determine if self-efficacy and/or psychological distress moderate the impact of FHL in diabetes management. Over two years, 125 participants with Type 2 diabetes will be recruited from the VA Boston Healthcare System. All participants wilt complete measures to assess FHL, self-efficacy, psychological distress, and diabetes self-care activities. Staff will gather objective indicators of diabetes management (i.e., lab values) by reviewing participants' medical charts. It is hypothesized that 1) Inadequate FHL, limited patient self-efficacy, and psychological distress will predict poorer diabetes management as reflected by self-report self-care activities and objective health indicators; 2) Self efficacy will moderate the effects of FHL on diabetes management, such that higher levels of self efficacy will result in improved diabetes management, and; 3) Psychological distress will weaken the relationship between FHL and diabetes management, such that increased psychological distress will result in poorer diabetes management. Results from this pilot project will be used to support and develop interventions to improve diabetes management.

Providers' Views of the Roles of Medical Interpreters

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

The importance of medical interpreters to improve the health literacy of patients with limited English proficiency (LEP; e.g., through effective communication with health care providers) has been widely recognized; however their roles and functions are less understood and more widely debated. Although there are a few studies that have examined how interpreters understand their roles in health care settings, no studies have examined health care providers' expectations for the roles of interpreters and the quality of bilingual health communication. The objective of the study is to generate a new communication theory that highlights providers' communicative goals during a medical encounter and educates interpreters to respond to the providers' needs more effectively. The specific aims of this study are (a) to assess providers' experiences with, perceptions of, attitudes about, expectations for medical interpreters and (b) to explore differences in these dimensions across different medical specialties. The proposed study is a two-year project, involving both qualitative and quantitative methods. In year one, focus groups will be conducted with health care providers who have worked with medical interpreters to explore their views of interpreter-mediated interactions. In year two, based on the themes and categories developed from the focus group interviews, the Principal Investigator will develop a questionnaire to survey health care providers about their attitudes about medical interpreters. The use of focus groups in year one to develop and test questionnaires in year two will increase the reliability and validity of the instrument. The specific research questions are: (a) What are providers' experiences with and attitudes about the communicative strategies used by interpreters? (b) What are the criteria used by providers to evaluate the success of bilingual health communication?; (c) What are providers' expectations for interpreters' roles and performances?; and (d) Do providers in different specialties vary in their perceptions, attitudes, and expectations? Answering these questions will allow the Principal Investigator to develop a program of research that includes further developing bilingual health communication theory and designing training programs to increase health literacy of patients with LEP.

Reducing Adverse Self-Medication Behaviors in Older Adults with Hypertension

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

Our goal is to reduce adverse self-medication practices in older adults with hypertension. A computer program developed for older adults (Personal Education Program or PEP) will be modified as the next generation PEP, or PEP-NG, to include an interface to allow clients to enter self-medication behavior data independently on a wireless, touch screen tablet PC. Data entered on the PEP-NG will be analyzed via a secure server (ProHealth) and program content tailored to the specific adverse self-medication behaviors will be delivered. Summaries of the reported behaviors with corrective strategies will be printed for both patient and provider so the APRN has a good idea of the client's self-medication practices before beginning the face-to-face interview. Thus, the PEP-NG will make optimal use of the client's waiting time and the APRN's clinical time. Specific aims are at three levels. 1) To design an interface for the PEP-NG with: a) desirable characteristics for both older adults and primary care providers; and b) minimal user burden. 2) To show that APRNs will increase: a) knowledge concerning potential drug interactions arising from older adults' self-medication practices; b) self-efficacy for teaching older adults about potential drug interactions; c) self-efficacy for communicating with older adults about self-medication; and to c) demonstrate satisfaction using the PEP-NG with clients. 3) To show that older adults using the PEP-NG will: a) increase knowledge concerning potential drug interactions arising from self-medication practices; b) increase self-efficacy as to how to avoid potential drug interactions arising from self-medication practice; c) reduce self-reported adverse behaviors associated with potential drug interactions; 4) improve prescription medication adherence; d) achieve target blood pressure readings; and demonstrate e) satisfaction with the PEP-NG and f) the APRN provider relationship. User-sensitive inclusive design methods will be used to develop and test the patient data interface. After beta-testing the PEP-NG in the primary care laboratory, the PEP-NG will be piloted by 20 APRNs affiliated with ProHealth primary care practices. RMANOVA with one within subjects factor (TIME) will be performed on APRNs' outcome measures at time 0, immediate post-instruction, and 3 and 6 months later. APRNs will each recruit 25 clients (500 total) meeting study criteria. The PEP-NG software will randomly assign each APRN's clients to either control (data collection only) and experimental (data collection plus educational intervention with targeted messages). Client outcome will be assessed at 0, 4, 8, 12, and 52 weeks and analyzed as a mixed ANOVA with NURSE and GROUP as between-subjects factors and TIME as a repeated-measures factor. Healthcare utilization will be compared between the 2 groups after 52 weeks and a cost-benefit analysis conducted.

Refining and Standardizing Health Literacy Assessment

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

Low literacy is associated with health disparities in access to health information, understanding of illness / treatment, health status, understanding and use of preventive services, and hospitalizations. Better understanding of patients' health literacy would allow for targeted interventions to reduce identified disparities. However, due to assessment burden, scoring imprecision, and inadequate English and Spanish language equivalence, available health literacy measures are not optimal for use in clinical practice or research. Aims: The aims of this application are 1) to develop English and Spanish language item banks for measuring reading-related health literacy skills; 2) to evaluate the feasibility, validity and acceptability of computer-based methods for comprehensive assessment of health literacy; 3) to develop and pilot computerized adaptive testing (CAT) of health literacy in clinical settings; and 4) to use a theory-driven framework to evaluate the associations between health literacy, patient characteristics, enabling resources, needs, health behaviors related to prevention of cardiovascular disease and cancer, and health status. Methods: State-of-the-science analytical methods will be used to develop sets of health literacy questions ("item banks") to support brief, targeted assessment using CAT. A validated bilingual multimedia "Talking Touchscreen" will be adapted to administer CAT to measure health literacy in English and Spanish primary care patients. A cross-sectional study will use this tool to evaluate the associations between patient characteristics, behaviors, outcomes and health literacy. Significance: This project will advance measurement technique through the development of a state-of-the-science computer adaptive tool that will allow precise and rapid measurement of health literacy, enhance ability to distinguish between language and literacy barriers, and increase understanding of associations between health literacy, health behaviors and health outcomes.

Testing a Video to Improve Provider-Patient Interaction

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

In order to control the spiraling costs of health care, persons with chronic diseases must be able to develop, in collaboration with their physicians, personalized health plans that direct care to the specific risk factors that threaten their health. To take a more active role in preventive health care, avoidance of costly procedures and management of long-term care, patients must be better informed about their health care needs and trained to engage in meaningful dialogue with care providers about the development of care plans to improve their health. Therefore, interventions to improve health literacy must be developed. The Specific Aims of the research are: to develop and test a measure to assess risk-related health literacy in a multicultural, low literacy population; and to test the efficacy of a video for patients designed to increase their risk-related health literacy. The health literacy measurement tool will be theoretically grounded in behavior change arid communication theory, and will include assessment of the full range of skills and knowledge needed for health literacy, including listening and speaking, and will address the context-specific cultural and conceptual factors that affect health literacy. It will have the eight attributes of a quality instrument: conceptually modeled, reliable and valid, responsive, interpretable by the intended respondents, of low respondent burden, able to be developed in alternative forms appropriate for different populations in which it might be used, and appropriately adapted for cultural and language considerations. We will utilize an iterative instrument development process integrating qualitative, cognitive and psychometric methods in the design process. The assessment will be computerized and will utilize "Talking Touch Screen" programming to enhance utilization among low-literate populations. The video will be tested using a randomized control design among a multi-cultural patient population at the University of New Mexico. This research addresses the priorities of announcement PAR-04-117 "Understanding and Promoting Health Literacy."

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

Susan Shaw, PhD, University of Arizona
National Cancer Institute

Health literacy, defined as the ability to understand or act on medical/therapeutic instructions, is increasingly recognized as an important factor in patient compliance and chronic disease outcomes. Health care providers are beginning to assess patient education and other materials from the perspective of readability and patient literacy. Less work has been done, however, to place health literacy in the broader context of socioeconomic and cultural differences among patients and between providers and patients that hinder communication and compliance. The proposed project aims to broaden our understanding of health literacy by identifying and accounting for the cultural factors that shape health literacy in low-income, ethnic minority and immigrant populations. To better understand the cultural influences on low health literacy and the effects of health literacy on health, the proposed project combines qualitative and quantitative methods to meet the following specific aims: 1. To assess variation in health literacy among native and non-native English speakers; 2. To identify factors associated with health literacy, including a) language spoken at home, b) recency of immigration, c) sources of health information, and d) other cultural beliefs and practices; 3. To use a prospective multimethod research design to explore the impact of health literacy on chronic disease outcomes (e.g., asthma, diabetes, and hypertension), including: a. the association between health literacy and patient compliance with therapeutic , and b. the role of health literacy in patient-provider communication; 4. To identify effective ways to combine qualitative and quantitative research methods to further knowledge of health literacy; and 5. To develop recommendations for primary health care providers on chronic disease management for ethnically diverse patients with low health literacy. To achieve these aims, we propose to conduct epidemiological surveys with a targeted sample of 500 patients from 5 ethnic groups (100 per group) recruited from Caring Health Center, a Section 330 health center in western Massachusetts. Chart abstracts will collect chronic disease outcomes at baseline and two 12-month follow-ups. Focus groups, ethnographic interviews, chronic disease diaries and home observations with a subsample of patients will provide greater contextualization and detail, aiding in survey development and the interpretation of survey findings.