developing culturally appropriate interventions in heart disease stroke prevention health literacy considerations septe

1. Developing Culturally Appropriate Interventions in Heart Disease & Stroke PreventionHealth Literacy ConsiderationsSeptember 16, 2009 Julie Gazmararian, PhD, MPH National Center for Health Marketing Associate Professor Department of Epidemiology Rollins School of Public Health Cynthia Baur – Director, division of health communication and marketing, NCHMCynthia Baur – Director, division of health communication and marketing, NCHM

2. Overview of Session Definitions Increasing attention on health literacy Measurement of health literacy State of health literacy research

3. Definitions

4. Health Literacy …”the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” NLM Complete Bibliographies of Medicine, 2000 Healthy People 2010

5. Functional Literacy “An individual’s ability to read, write, and speak in English, 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 of 1991

6. How is Health Literacy Different from General Literacy? Builds on literacy skills BUT ALSO Cultural consideration Topic area and conceptual knowledge across a wide range, for example: knowledge of bodily functions terms for specific health conditions understanding of scientific results and risk Literacy skills are essential for functional health literacy Health literacy and literacy skills are highly correlated because literacy is a part of health literacy But is also includes…. Literacy skills are essential for functional health literacy Health literacy and literacy skills are highly correlated because literacy is a part of health literacy But is also includes….

7. Health Literacy in Public Health Contexts Our “working definition”: What we do as a society to ensure that health information and services are available, understandable, and usable by everyone. AJPM 2009: PH Literacy is defined as the degree to which individuals and groups can obtain, process, understand, evaluate, and act on information needed to make public health decisions that benefit the community. “working” definition – we are trying to broaden the focus of health literacy “working” definition – we are trying to broaden the focus of health literacy

8. How Well Does Public Health Deliver Clear Answers to these Common Questions? Should I get the flu shot? What is cholesterol? How can I prevent diabetes? Why should I exercise? Most of the health literacy work to date has focused on the clinical setting – but it is just as important in the public health sectorMost of the health literacy work to date has focused on the clinical setting – but it is just as important in the public health sector

9. Medical Messages Complex messages Often changing messages Diverse audience – ethnicity/age/educationComplex messages Often changing messages Diverse audience – ethnicity/age/education

10. Increasing Attention on Health Literacy

11. Increased Attention on Health Literacy Over 450 citations in peer-reviewed literature Healthy People 2010 – many objectives relate to health literacy AHRQ Evidenced-based review of health literacy interventions IOM Reports Priority Areas for National Action: Self-management/Health literacy Report from Committee on Health Literacy Surgeon General Workshop on scientific basis for health literacy as a major public health issue Health Professional Societies’ investment in meetings, research, advisory committees, e.g. ACP, ADA, AAP, AMA Healthy People 2010 Objective 11-2: Improve health literacy Objective 17-3: Increase review with older patients newly prescribed and OTC medications Many objectives relate to health literacy Health Professional Societies – ACP, AAP, ADA, AMA Healthy People 2010 Objective 11-2: Improve health literacy Objective 17-3: Increase review with older patients newly prescribed and OTC medications Many objectives relate to health literacy Health Professional Societies – ACP, AAP, ADA, AMA

12. Former U.S. Surgeon General Dr. Richard Carmona, Former U.S. Surgeon General Mentioned health literacy in 200 of last 260 speeches as Surgeon General “The health of our country depends on our understanding of basic health information in order to lead a healthy life Health care professionals do not recognize that patients do not understand the health information we are trying to communicate. We must close the gap between what health care professionals know and what the rest of America understands.”

13. National sample survey conducted in 1992 and 2003 Performed by U.S. Department of Education,National Center for Health Statistics In-person interviews with Americans age 16 and older (N~20,000) Tested in English or Spanish Over sampling of Blacks and Hispanics Literacy in AmericaNational Assessment of Adult Literacy (NAAL)

14. Emphasized the use of printed everyday materials (newspapers, prescriptions, bills) needed to function adequately in one’s environment 153 items that assessed prose, document, or quantitative literacy Most items required searching text for specific information, short written responses NAAL Domains

15. Health Literacy in the NAAL Health Literacy component requested by U.S. Department of Health and Human Services 28 of the 153 NAAL items Mix of prose, document, and quantitative Mix of clinical, preventive, and bureaucratic Results released in Sept 2006 Provides first national population assessment of health literacy http://nces.ed.gov/naal/ Most recently - In the 2003 NAAL – health literacy was assessed… Health literacy results in the 2003 NAAL were groundbreaking because they represent the first prevalence data on the general English speaking adult populations ability to understand and use print health materials as they are currently designed and writtenMost recently - In the 2003 NAAL – health literacy was assessed… Health literacy results in the 2003 NAAL were groundbreaking because they represent the first prevalence data on the general English speaking adult populations ability to understand and use print health materials as they are currently designed and written

16. Categories and Sample Health Tasks Proficient – Calculate employee’s share of health insurance costs for a year Intermediate – Determine healthy weight range; medication timing Basic – Explain why it is difficult to know if they have a specific chronic condition Below Basic – Identify what is permissible to drink before a medical test http://nces.ed.gov/naal/ Proficient – calculate an employee’s share of health insurance costs for a year, using a table that shows how the employee’s monthly cost varies depending on income and family size Intermediate – determine a healthy weight range for a person of a specified height, based on a graph that related height and weight to BMI; Determine what time a person can take a prescription medication, based on information on the prescription drug label that relates the timing of medication to eating Basic –Explain why it is difficult for people to know if they have a specific chronic medical condition, based on information in a one-page article about the condition. Below Basic –Identify what is permissible to drink before a medical test, based on short instructionsProficient – calculate an employee’s share of health insurance costs for a year, using a table that shows how the employee’s monthly cost varies depending on income and family size Intermediate – determine a healthy weight range for a person of a specified height, based on a graph that related height and weight to BMI; Determine what time a person can take a prescription medication, based on information on the prescription drug label that relates the timing of medication to eating Basic –Explain why it is difficult for people to know if they have a specific chronic medical condition, based on information in a one-page article about the condition. Below Basic –Identify what is permissible to drink before a medical test, based on short instructions

17. Sample Health Literacy Item Respondent reads a brochure and then asked to respond to the question – “according to the brochure, why is it difficult for people to know if they have high blood pressure?”Respondent reads a brochure and then asked to respond to the question – “according to the brochure, why is it difficult for people to know if they have high blood pressure?”

18. Sample Health Literacy Item, continued Here is the brochure – Correct answers were “symptoms are not usually present”; “high blood pressure is silent” % of adults who answered correctly in the NAAL – only 10% with below basic skills, 71% with basic, 94% with intermediate skills and 100% with proficient skillsHere is the brochure – Correct answers were “symptoms are not usually present”; “high blood pressure is silent” % of adults who answered correctly in the NAAL – only 10% with below basic skills, 71% with basic, 94% with intermediate skills and 100% with proficient skills

19. Health Literacy in America: Results from the NAAL 100+ Million Adults have Basic or Below Basic Health Literacy Kutner et al. National Assessment of Adult Literacy, 2006

20. Health Literacy by Age

21. Health Literacy by Education Acknowledge challenges with readability for adults – what does a 5th grade reading level mean? Increased consciousness about not focusing on grade level – misconceptions about responding to HL Also shows that health literacy measures something beyond education – consistent findingAcknowledge challenges with readability for adults – what does a 5th grade reading level mean? Increased consciousness about not focusing on grade level – misconceptions about responding to HL Also shows that health literacy measures something beyond education – consistent finding

22. Health Literacy by Race/Ethnicity

23. Underserved PopulationsHave Lowest Health Literacy Skills Elderly Minorities Immigrants The poor The homeless Prisoners Persons with limited education The majority of people in the U.S. with limited health literacy skills are white, native-born Americans.

24. NAAL – Health Information Seeking Behaviors Adults with Below Basic or Basic health literacy were… less likely than adults with higher health literacy to get information about health issues from written sources (newspapers, magazines, books, brochures, or the Internet) more likely than adults with higher health literacy to get a lot of information about health issues from radio and television Mention Mayben&Giordano 2007 article - surveyed 126 low income patients recently diagnosed with HIV. Found that inadequate health literacy as an independent predictor of needing instruction – the low income population with HIV infection lags behind the general population in internet access and may not benefit from internet-dependent advances in health communication, including HIV-related interventions Mention Wolf 2004 article – patients with low literacy skills were more likely to state that their physician was their sole source of HIV information Increasing concern with growing digital divideMention Mayben&Giordano 2007 article - surveyed 126 low income patients recently diagnosed with HIV. Found that inadequate health literacy as an independent predictor of needing instruction – the low income population with HIV infection lags behind the general population in internet access and may not benefit from internet-dependent advances in health communication, including HIV-related interventions Mention Wolf 2004 article – patients with low literacy skills were more likely to state that their physician was their sole source of HIV information Increasing concern with growing digital divide

25. Patient Testimonies Video Putting a face behind the data…

26. Clinical Research Instruments Make point that these tools are measuring literacy using health materials Make point that these tools are measuring literacy using health materials

27. Most Common Measures TOFHLA (S-TOFHLA) REALM Newest Vital Sign

28. S-TOFHLA Numeracy questions Correct timing for dosing medication How to interpret blood sugar values Reading questions Instructions for preparation for upper gastrointestinal tract radiographic procedure (4th grade level, 16 Q) Rights and responsibilities section of Medicaid application (10th grade level 20 Q)

29. Example of Numeracy Question Normal blood sugar is 60 – 150 Your blood sugar today is 160

30. INADEQUATE (< 55) Often misread dosing instructions and appointment slips. MARGINAL (56-66) Struggle with prescription instructions. ADEQUATE (67-100) Handle most health care tasks. Struggle with informed consents. S-TOFHLA Categories

31. The REALM: A Word-Recognition Test 0-18 < 3rd grade 19-44 4-6 grade 45-60 7-8 grade 61-66 > 9th grade Davis TC. FamMed, 1993

32. The Newest Vital Sign (NVS) Nutrition label from an ice cream carton accompanied by 6 questions Physician or nurse to test patients’ health literacy at the same time they measure vital signs

33. NVS Food Label If you eat the entire container, how many calories will you eat? If you are allowed to eat 60 g of carbohydrate as a snack, how much ice cream could you have? READ TO SUBJECT: This information is on the back of a container of a pint of ice cream. 1. If you eat the entire container, how many calories will you eat? ___________ 2. If you are allowed to eat 60 g of carbohydrate as a snack, how much ice cream could you have? 3. Your doctor advises you to reduce the amount of saturated fat in your diet. You usually have 42 g of saturated fat each day, which includes 1 serving of ice cream. If you stop eating ice cream, how many grams of saturated would you be consuming each day? ____________ 4. If you usually eat 2500 calories in a day, what percentage of you daily value of calories will you be eating if you eat one serving? ________ Pretend that you are allergic to the following substances: Penicillin, peanuts, latex gloves, and bee stings. 5. Is it safe for you to eat this ice cream? _______ 6. (Ask only if the patient responds ‘no’ to question 5) Why not? READ TO SUBJECT: This information is on the back of a container of a pint of ice cream. 1. If you eat the entire container, how many calories will you eat? ___________ 2. If you are allowed to eat 60 g of carbohydrate as a snack, how much ice cream could you have? 3. Your doctor advises you to reduce the amount of saturated fat in your diet. You usually have 42 g of saturated fat each day, which includes 1 serving of ice cream. If you stop eating ice cream, how many grams of saturated would you be consuming each day? ____________ 4. If you usually eat 2500 calories in a day, what percentage of you daily value of calories will you be eating if you eat one serving? ________ Pretend that you are allergic to the following substances: Penicillin, peanuts, latex gloves, and bee stings. 5. Is it safe for you to eat this ice cream? _______ 6. (Ask only if the patient responds ‘no’ to question 5) Why not?

34. Comparing Measures All highly correlated REALM is “word recognition” test: does not measure comprehension May be problematic among the elderly Shorter version is available TOFHLA is true comprehension test Requires significant staff training Long, but short form available Screening questions of unclear value Must be better than age, race, & education Clearly there is a need for better instruments – what we currently have are instruments that use health information – not really clear they are measuring HEALTH LITERACY Also need to remember that literacy may affect the quality of data gathered by self-report questionnaires – perhaps even if they are administered verbally. Need to develop measures to clarify whether literacy affects self-report and how to design questionnaires that are valid and consistent across literacy levels. Clearly a need for measures to use on national surveys Clearly there is a need for better instruments – what we currently have are instruments that use health information – not really clear they are measuring HEALTH LITERACY Also need to remember that literacy may affect the quality of data gathered by self-report questionnaires – perhaps even if they are administered verbally. Need to develop measures to clarify whether literacy affects self-report and how to design questionnaires that are valid and consistent across literacy levels. Clearly a need for measures to use on national surveys

35. State of Health Literacy Research

36. A lot of the work has been in areas of chronic disease – diabetes, cancer, cardiovascular, some reproductive health, little in the area of nutrition & pa, a lot with elderlyA lot of the work has been in areas of chronic disease – diabetes, cancer, cardiovascular, some reproductive health, little in the area of nutrition & pa, a lot with elderly

37. Outcomes Associated with Health Literacy Health Outcomes/Health Services General health status Hospitalization Prostate cancer stage Depression Asthma Diabetes control HIV control Mammography Pap smear Pneumococcal immunization Influenza immunization STD screening Cost Behaviors Only Substance abuse Breastfeeding Behavioral problems Adherence to medication Smoking Knowledge Only Birth control knowledge Cervical cancer screening Emergency department instructions Asthma knowledge Hypertension knowledge

38. What We Have Learned Limited health literacy is: Common, and more problematic for elderly and minorities (especially Latinos) Associated with less health knowledge, worse health behaviors Associated with worse health outcomes and increased utilization and costs Limited health literacy does not explain everything… Access barriers, depression are major contributors to worse health outcomes Other important contributors – health care system, self-care management expectations, cultural influences

39. Emerging Evidence on the Benefits of Interventions Targeted to Populations with Limited Health Literacy

40. Research Evidence for Interventions Educational media Verbal communication strategies Reorganizing care systems

41. Summary of Systematic Review Interventions to make health care materials easier to understand have had mostly positive effects on knowledge in populations with low literacy Improvement in actual health outcomes or narrowing disparities not demonstrated Substantial room for improvement in quality of studies Following guides like the principles of clear health communication can improve transmission of knowledge

42. Editorial Comment Insanity: production of educational materials that are not easily understood by the vast majority of the audience The only way to examine understandability is to ASK the audience Rewriting educational materials alone will not solve the problem – important to consider other factors, particularly the role of culture Need to be culturally appropriateNeed to be culturally appropriate

43. Ultimately, the purpose of health literacy…is better health Written communication, David Rosen, 2008

44. What questions do you have?