Health Literacy: Potential Pathway to Oral Health for the Elderly? Alice M. Horowitz, PhD School of Public Health June 28, 2007 Santa Fe, New Mexico

Overview What is health literacy and why is it important? Historical perspective Recent activities Strategies for improving health literacy

Health literacy is a relatively new concept especially as it relates to oral health

Health Literacy is an Emerging Issue that is Ripe for Leadership: Pre-doctoral education Resident and post-doctoral-training Research Policy

Literacy - Defined The ability to read, write, speak and compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one’s goals and develop one’s knowledge and potential. National Literacy Act 1991

Health Literacy -Defined Health literacy represents the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand, and use the information in ways which promote and maintain good health. Health literacy means more than being able to read pamphlets and successfully make appointments. By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment (WHO, 1998)

Health Literacy-Defined “The degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions” Ratzan and Parker, 2000 HP2010 2000 IOM Report 2004 Potential intervention points include: The NIH has recently released a Program Announcement for research on this topic, and a workshop report on oral health literacy has just been published (JPHD) and provides a series of needed research and other actions.

Oral Health Literacy-Defined “The degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate oral health decisions” HP2010, 2000

Health Literacy is Dependent Upon Individual and Systemic Factors: Communication skills of consumers and providers Knowledge of consumers and providers of health topics Culture and societal impact Demands of the healthcare system Demands of the situation/context

Communication Skills Health literacy is dependent on the communication skills of consumers and providers Communication skills include literacy skills—reading, writing, numeracy, speaking, listening and comprehension Communication skills are context specific for both patients and providers

Knowledge of Health Topics Health literacy is dependent on knowledge of consumers and providers of health topics Patients with limited or inaccurate knowledge about the body and causes of disease may not: Understand the relationship between lifestyle factors (e.g. diet and exercise; oral hygiene practices and gingivitis) and health outcomes Recognize when they need to seek care Have current prevention information Health information can overwhelm anyone--even people with advanced literacy skills. Providers who do not keep current with the state of the science cannot provide accurate knowledge and information and evidence-based services for their patients.

Cultural and Society Culture and societal impacts on Individuals: How people communicate and understand health information How people think and feel about their health If and how people value oral health When and from whom people seek care How people respond to recommendations for lifestyle changes and treatment

Cultural and Society Culture affects Providers: How providers communicate and understand health information How providers think and feel about racial/ethnic/economic groups other than their own How providers value preventive measures Where they obtain new information If and how providers respond to recommendations and guidelines

Demands of the Healthcare System Health literacy is dependent on the demands of the healthcare and public health systems. Individuals need to: know how to locate and navigate a health facility read, understand, and complete many kinds of forms to receive treatment, provide consent for treatment and payment reimbursement articulate their signs and symptoms know about various types of health professionals and what services they provide and how to access those services Know how to ask questions

Demands of the Situation or Context Health literacy is dependent on the demands of the situation/context Health contexts are unusual compared with other contexts because of an underlying stress or fear factor Health contexts may involve unique conditions such as physical or mental impairment due to illness Health situations are often new, unfamiliar, intimidating and often exhausting Some health facilities have staff that are not particularly empathetic---not user friendly

Scope of Health Literacy Functional skills include reading, writing, speaking, listening, basic arithmetic skills Knowledge of health topics --information & services Knowledge must be related to decision making CORE ISSUE: UNDERSTANDING

Health Literacy is Important Because it Affects One’s Ability to: Understand dental/medical concepts Share personal and health information with providers Participate in their health care & that of their children Navigate the healthcare system, including locating providers and services, finding transportation and completing forms

Health Literacy is Important …cont’d Act on health-related news and announcements These outcomes impact: health outcomes healthcare costs quality of care

National Academy on an Aging Society According to a 1998 study, the cost of low health literacy in the US could be anywhere from $30 billion to as much as $73 billion annually. National Academy on an Aging Society

Individuals with Limited Health Literacy Skills Have: Lower use of preventive services Higher use of treatment services which result in higher healthcare costs Often reported feeling a sense of shame about their skill level and/or developed strategies to compensate

Measuring Health Literacy Health literacy is measured as functional literacy—people’s ability to apply reading skills to everyday tasks involving prose, documents, and numbers. Current population data on literacy come from the 2003 National Assessment of Adult Literacy (NAAL): Health literacy data from the NAAL were released in 2006. Based on literacy data from 1992, it was estimated that 90 million adults have difficulty understanding and acting upon health information. Note: the 2003 NAAL included a specific measure of health literacy.

2003 NAAL Findings NAAL reports a separate score for each of three literacy areas: Prose literacy: Skills needed to search, comprehend, and use continuous texts such as news stories and brochures Document literacy: Skills needed to search, comprehend, and use noncontinuous texts such as job application forms, maps, and food labels Quantitative literacy: Skills needed to identify and perform computations using numbers embedded in printed materials, such as numbers used in balancing a checkbook or completing an order form

2003 NAAL Findings Findings reported participants’ ability to complete these tasks with 67% accuracy by levels: Below Basic: Can perform tasks involving brief and uncomplicated texts and documents. Adults can generally locate a piece of information in a news story. Basic: Able to locate information in text, make low-level inferences, and integrate easily identifiable pieces of information. Intermediate: Able to integrate information from relatively long or dense texts, determine appropriate arithmetic operations, and identify how to perform the operation. Proficient: Demonstrate proficiencies associated with long and complex documents and text.

Number of Adults in Each Prose Literacy Level: NAAL 2003 Millions of adults We are breaking down the top green bar from the previous slide. These numbers are based on adult population of 220 million Adults who could not be interviewed due to language spoken or cognitive or mental disabilities (3%) are excluded from this figure. Most adults scoring in Below Basic would not be able to read the dosage chart on a package of over-the-counter pediatric cold medicine. Adults scoring in Basic would find the dosage chart difficult.

Measures of Health Literacy Most measures of health literacy at the individual level were developed in the 1990s: Rapid Estimate of Adult Literacy in Medicine (REALM) Test of Functional Health Literacy in Adults (TOFHLA and S-TOFHLA) Newest Vital Sign (NVS) Literacy Assessment for Diabetes (LAD) REALD-30 & 99; TOFHLiD (dental) HANDOUT REALM is a medical-word recognition and pronunciation test. It can be administered and scored in under 3 minutes. Participants read from a list of 66 common medical terms that patients may be expected to read in order to participate effectively in their own healthcare. The words are arranged in thee columns according to the number of syllables and pronunciation difficulty. Scores can be converted into four reading grade levels. The TOFHLA includes a 17-item test of numerical ability and a 50-item test of reading comprehension. The test draws on materials commonly used in healthcare settings (for example, the patient “Rights and Responsibilities” section of a Medicaid application). Total scores for the TOFHLA are divided into three levels: inadequate, marginal, and adequate. There is also an abbreviated version called the S-TOFHLA that takes 12 minutes or less to administer. Both the IOM and AHRQ reports conclude that REALM and TOFHLA are assessments of reading ability, and, as such, are inadequate measures of health literacy.

Measurement Needs Health literacy measures based on functional literacy do not capture the full range of skills needed for health literacy. Current assessment tools (for populations and individuals) cannot differentiate among: Reading ability Lack of health-related background knowledge Lack of familiarity with language and materials Cultural differences in approaches to health. Health literacy measures are unable to account for the demands of the healthcare system and the demands of the situation/context. The take away point = we need better tools!

Who Is at Risk? The problem of limited health literacy is greater among: Older adults Those who are poor People with limited education Minority populations Persons with limited English proficiency (LEP) Tell story here.

Who is at Risk? Many of the same populations at risk for limited health literacy also suffer from disparities in health status, illness (including heart disease, diabetes, obesity, HIV/AIDS, dental caries, periodontal disease, cancer, lead poisoning and low birth weight), and death.

Health Literacy: Use of Preventive Services Persons with limited health literacy skills are less likely to use preventive measures such as: Mammograms Pap smears Flu shots Use of fluoride toothpaste Preventive dental appointments Lead screening for children In the studies cited in the next three slides, health literacy was measured by the Rapid Estimate of Adult Literacy (REALM) or Test of Functional Health Literacy in Adults (TOFHLA). Persons with limited health literacy were compared to those with adequate health literacy. Although an increasing number of studies have linked limited health literacy to poor health, the causal relationship between health literacy and health is unknown. For example, persons with poor health literacy may skip preventive measures because of lack of financial resources.

Health Literacy: Knowledge About Medical Conditions, Prevention and Treatment Persons with limited health literacy skills: Are more likely to have chronic health conditions and less likely to manage them effectively. Have less knowledge of their disease (e.g., diabetes, asthma, HIV/AIDS, high blood pressure) periodontal diseases, dental caries and its management. In these studies, health literacy was measured by the Rapid Estimate of Adult Literacy (REALM) or Test of Functional Health Literacy in Adults (TOFHLA). Persons with limited health literacy were compared to those with adequate health literacy. Although an increasing number of studies have linked limited health literacy to poor health, the causal relationship between health literacy and health is unknown.

Oral Health Literacy Framework Oral Health Outcomes and Costs 2 Health System 1 Culture And Society Oral Health Literacy Oral Health Outcomes and Costs 3 Education System Source: Adapted from Institute of Medicine, Health literacy: A prescription to end confusion.

Health Literacy: A prescription to end confusion, IOM’s report has and is having a significant impact. For example in the research arena: NIH issued two PA’s on understanding and promoting health literacy 18 projects were awarded on the first round of applications A PI meeting was held September 2006 The PAR was reissued for 3 more years

Understanding and Promoting Health Literacy (PAR-04-116; PAR-06-132) GOAL: Increase scientific understanding of the nature of health literacy and its relation to: Healthy behaviors Illness prevention and treatment Chronic disease management Health disparities Risk assessment Health outcomes

Understanding and Promoting Health Literacy PAR-04-116 Understanding and Promoting Health Literacy (R01) PAR-06-132 Understanding and Promoting Health Literacy (R03) R03 – 2 years, direct costs up to $50,000 a year R01 – 5 years or less; need to obtain approval for applications with budgets greater than $500,000 in any one year

In Addition HRSA has stepped up their work in health literacy CMS has increased their efforts in this area AHRQ supported an evidence-based review, and co-funds some of the NIH projects ADA has recently organized a National Oral Health Literacy Advisory Committee

Oral Health Literacy The results of a 2004 NIDCR workgroup on oral health literacy, recently published,* includes recommendations for dental and craniofacial research and background on health literacy and its impact on health outcomes. *Report of Workgroup: The Invisible Barrier: Literacy and its Relationship with Oral Health. J Public Health Dent. 2005;65:174-183

Research Needs Instrument (s) to evaluate oral health literacy Compare oral health literacy instruments with health literacy instruments Determine impact of health literacy on oral health outcomes Determine roles of dental care providers in increasing health literacy Determine what dental & dental hygiene schools teach regarding communication skills Assess best methods for teaching communication skills in dental provider schools Determine communication skills of practicing dental care providers We will be highlighting the following solicitations, but also will mention a few other solicitations. Background will be provided for health literacy and for community participatory research.

Healthy People 2010 Health Communication Objectives 11-1 Internet access in the home 11-2 Health literacy 11-3 Research & evaluation of health communication programs 11-4 Quality of internet health Web sites 11-5 Centers of excellence in health communication 11-6 Increase the proportion of persons who report that their health care providers have satisfactory communication skills

Two Healthy People 2010 Objectives Specifically Address the Need for Health Literacy Improvement: 11-2. Improve the health literacy of persons with inadequate or marginal literacy skills 11-6 Increase the proportion of persons who report that their health care providers have satisfactory communication skills

Key Point: Communication between patient and provider is pivotal to positive health outcomes

Medical Expenditure Panel Survey: Evaluating Providers How often did doctors or other health providers listen carefully to you? [56% 2000 MEPS] How often did doctors or other health providers explain things in a way you could understand? [58%] How often did doctors or other health providers show respect for what you had to say? [58%] How often did doctors or other health providers spend enough time with you? [45%]

Clear & Effective Communication Includes: Plain language Culturally and linguistically appropriate language Appropriate reinforcement Teach back to ensure patient understands Patient centered

Educate policy makers at all levels about the importance of health literacy and its impact on health outcomes

Questions Policy-makers Should ask: What are the literacy rates among those eligible to participate in public programs in my state? At what reading level is current health information provided? Have changes been made to simplify the process for enrolling in public programs in my state? Is it possible to create a coordinated application process to decrease the number of forms that need to be completed to receive medical assistance? Is public health information suitable for those with low literacy? What can be done to increase literacy in my state? The Council of State Governments 2002

Additional Questions to Ask What do providers know and do about primary prevention? (e.g. how to prevent dental caries). What do providers teach/tell their patients? Are informed consent forms in plain language? Do provider schools teach communication skills? Do providers provide communication skills to their staff? Do dental examining boards require testing on communication skills?

More Questions Is the hospital/clinic environment user friendly? Are interpreters available? Are the signs understandable to patients? Are patient navigators available?

Who Is Responsible for Improving Health Literacy? A health literate America is a society in which health systems and institutions take responsibility for providing clear communication and adequate support to facilitate health-promoting actions based on understanding. —Institute of Medicine, 2004

Health Literacy is an Emerging Issue that is Ripe for Leadership Pre-doctoral education Resident and post-doctoral training Research Policy

What will the Santa Fe Group do to Increase Oral Health Literacy Among the Elderly?

Thank you!