1. Reading Between the Lines: deciphering the connections between literacy and health Carmen E. Guerra, MD, FACP Assistant Professor of Medicine Division of General Internal Medicine University of Pennsylvania School of Medicine

2. Overview Definitions Scope of the problem and who is particularly vulnerable How to assess literacy Patient’s perspective Consequences of low literacy Summary

3. Definitions Literacy – the ability to read, write and speak Functional literacy – the ability to use reading, writing and computational skills to meet the needs of everyday life situations, function on the job and in society, achieve one’s goals and develop knowledge and potential –Varies by context and setting

4. Definitions Functional health literacy The ability to read, understand and act on health information, including information on prescription labels and appointment slips, complete health insurance forms, follow instructions for diagnostic tests and understand other essential information required to adequately function as a patient (AMA, 1999) May be significantly worse than a patient’s general literacy

5. Literacy≠ Education The number of years of school completed measures the education attempted, not education attained The number of years of school completed does not measure what individuals can do with the education or the ability to apply it to their daily lives Education overestimates literacy level

6. Literacy in the United States National Adult Literacy Survey Conducted by National Center for Education Statistics in 1992 to assess functional literacy Mean reading levels of adults in the U.S. was the 8 th grade; for Medicaid enrollees it was the 5 th grade 40-44 million Americans are functionally illiterate 50 million Americans had marginal literacy skills ½ the U.S. population has inadequate reading skills

7. Which Americans scored the lowest reading levels? African Americans Older than 65 Foreign born Living in poverty Health problems Imprisoned Fewer years of education

8. Measuring Literacy Word recognition tests: Wide Range Achievement Test-Revised (WRAT-R) Rapid Estimate of Adult Literacy in Medicine (REALM)* Medical Terminology Achievement Test (MART) Slosson Oral Reading Test-Revised (SORT-R) Reading comprehension tests: Peabody Individual Achievement Test-Revised (PIAT-R) Instrument for the Diagnosis of Reading (IDL) Functional health literacy tests: Test of Functional Health Literacy in Adults (TOFHLA and STOHFLA)*

9. Rapid Estimate of Adult Literacy in Medicine (REALM) A word recognition test 66 words in three columns Read aloud and score for pronounciation Score 0 if word mispronounced or not attempted; 1 if correctly pronounced No time limit, most patients with adequate literacy complete in 2-3 minutes Raw score of 0-66 then converted to reading level ( 9 th grades) Not validated in Spanish-speaking populations

10. REALM fatfatigueallergic flupelvicmenstrual pilljaundicetesticle doseinfectioncolitis eyeexerciseemergency stressbehaviormedication smear prescriptionoccupation

11. Test of Functional Health Literacy in Adults (TOFHLA and STOFHLA) Functional health literacy tests, thus measures ability to comprehend and apply information in a health care setting Reading comprehension and numeracy components Score 0 for incorrect responses; 1 for correct responses Raw score converted to: Inadequate, marginal and adequate health literacy categories Validated for use in English and Spanish populations

12. TOFHLA Reading comprehension section uses modified Cloze procedure Passages from: - preparation instructions for an upper GI series -“Rights and Responsibilities” section of a Medicaid application -Readability levels are grades 4.3 and 10.4, respectively Numeracy section consists of items from actual hospital forms, labeled prescription bottles, instructions for blood glucose levels, clinic appointments.

13. TOFHLA Your doctor has sent you for a ______ X-ray. a. stomach b. diabetes c. stitches d. germs You must have an ______ stomach when you come for ______. a. asthma a. is b. empty b. am c. incest c. if d. anemia d. it

14. Prevalence of inadequate functional health literacy 2659 indigent and minority patients at two urban public hospitals in Atlanta and Los Angeles TOFHLA Inadequate literacy in: –35% of English-speaking participants in Atlanta –42% of Spanish-speaking participants in LA –13% of English-speaking participants in LA

15. Prevalence of inadequate functional health literacy 3260 Medicare, mostly Caucasian enrollees aged 65 or older at four locations served by Prudential HealthCare plans (Cleveland, Houston, South Florida, Tampa) STOFHLA Inadequate functional health literacy in –24% of English-speaking participants –34% of Spanish-speaking participants Marginal functional health literacy in – 10% of English speakers – 20% of Spanish-speakers

16. Health care experiences of patients with inadequate functional health literacy Qualitative study of 60 patients with poor to marginal scores on REALM Six barriers: navigation, completing forms, medication instructions, communication with providers, interpretation of appointment slips, coping strategies to negative treatment by health care workers Sense of shame was the dominant prevailing theme

17. Navigation Problems with locating a clinic or hospital or departments within hospitals because unable to read signs, including street signs “I wouldn’t a knowed how to get here cause of my reading. And I probably wind up in Orange County somewhere. Yes, because I did, you know, that did happen to me one night….That’s why I brought him along [points to a friend].”

18. Navigation “I had to go in the basement to get some pads, I passed by that place a hundred times and I guess that man just got tired of me walking around down here, and he told me ‘let me see your paper, baby; let me see if I can help you,’ cause I had been down there so long.”

19. Completing forms A barrier to applying for medical care, understanding consent forms and educational literature “I’ve had a lot of illnesses, but I preferred to stay home, until I get better by taking anything I can. Because being asked to fill this out, to fill that out, I feel embarrassed to ask for help, to ask them to fill them out for me. They might get upset or they would say, ‘This lazy lady, she never learned to read,’ that’s how I think”

20. Medication instructions Many difficulties with reading prescriptions, resulting in medication errors such as taking a pill every three hours rather than TID. “They was supposed to be giving me some pain pills, some Motrin, and the prescription was wrote out wrong, and I was taking high blood pressure pills. And I went into a reaction….I started feeling stuff crawling on me and stuff, you know, messing with my nerves. And that’s when I asked my sister what was it. She said, ‘Dog, you can’t read!’…All of them figured I could read.”

21. Communication with providers Most complain provider does not listen or explain medical problem or treatment in a way they can understand Easily intimidated and less likely to ask questions or to admit they do not understand instructions Few have told their provider about their reading difficulties because of shame or because they don’t believe their physician is interested in knowing

22. Appointment slips Dates in numbers are more easily understood than prose Many patients rely on health care workers to tell them the date, and the appointment slip then serves as a reminder, often read by family members “I told one of my sons, ‘Tell me again, when do I have an appointment?’ And he told me, ‘You already missed it.’ I need to be asking them to tell me when I have the appointment, and then I won’t forget.”

23. Coping strategies Some ask for help, but many are ashamed to Some use family or friends as surrogate readers and/or to accompany them to appointments, but many others have not told family members about their poor reading skills Most rely on oral explanations or demonstrations Non-adherence or poor adherence often a consequence

24. Shame “All these problems, not knowing how to read, it feels like being blind, ignorant, I feel embarrassed to tell the doctor I cannot understand. I feel really bad, that I am not worth anything, that there is no reason for me to be in this world, that I came into this world only to suffer.”

25. Health care experiences of patients with inadequate functional health literacy Our healthcare places significant reading demands on patients Providers work under the assumption that patients can read adequately Ask patients about literacy: “A lot of our patients have trouble reading prescription bottles and other things like that. Is this a problem for you?” “Is there anyone who helps you to read your medicine bottles or other things we give you?”