1. HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

2. Disclosure The following people have no relevant financial, professional or personal relationships to disclose: Faculty: Patricia Abshier, PhD (ABD), MSPH, MSW Melanie Steilen, RN, BSN, ACRN

3. Objectives  Participants will be able to  Define Health Literacy  Discuss the impact of Health Literacy on HIV Care  Discuss methods for addressing health literacy with clients/patients  Demonstrate the use of the Newest Vital Sign and the REALM-R for formal assessment

4. Basic information about a colonoscopy, as perceived by a patient with limited literacy skills

5. Health Literacy Is… “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Healthy People 2010 Health Literacy Includes the ability to perform essential health care tasks: Understand appointment slips Follow instructions on medication labels Obtain information about an illness Participate in discussions of informed consent Enroll in health insurance plan

6. Health Care and Health Literacy  Most patient instructions are written  Verbal instructions  Often complex  Delivered rapidly  Easy to forget in stressful situation  Increasingly complex health system  More medications  More tests and procedures  Greater self-care requirements  Participatory/informed decision-making

7. Impact of Health Literacy  Health Outcomes/Health Services  General health status  Hospitalization  Emergency department use  Depression  Diabetes control  HIV control Adherence / Compliance Retention  Immunization  STD  Behaviors Only  Substance abuse  Behavioral problems  Adherence to medication*  Smoking*  Knowledge Only  Birth control knowledge  Emergency department instructions  Asthma knowledge  Hypertension knowledge DeWalt, JGIM 2004

8. Comprehension of Medicare Gazmararian, JAMA 1999

9. Health Literacy and Medication

10. One capsule twice daily One tablet by mouth twice a day for 3 days One tablet two times a day One tablet by mouth twice a day Tomar 1tab XLA boca vezdia X7 dias luego do XLA boca X7 dias Take one by mouth 3? Times a day Take as directed

11. HIV/AIDS Related Findings  Persons of low literacy were more likely to miss treatment doses because of confusion, depression, and desire to cleanse their body than were participants with higher health literacy.  Poor health literacy creates barriers to fully understanding one’s health, illness, and treatments. Misperceptions of treatment in the case of HIV infection creates danger for potentially transmitting treatment-resistant strains of HIV.

12. The Prevalence of Limited Health Literacy N=31,129 subjects from 85 Studies

13. HIV/AIDS Related Findings Health Literacy IndicatorPercent of Clients Read below a 9th grade level48% Can't name their medications33% Don’t know how to take their medications of those below 9 th grade level 66% Don't know meaning of viral load or CD4 count of those below 9 th grade level 75% N = 157 HIV Positive (Shreveport, LA)

14. HIV/AIDS Related Findings  204 patients receiving care in Shreveport, Louisiana and Chicago, Illinois.  One-third of patients had limited literacy skills. These patients were less able to describe CD4 count, viral load and to correctly identify medications in their regimen.  Limited literacy was an independent predictor of poor understanding of CD4 count, correct medication identification.

15. HIV/AIDS Related Findings  A significant interaction was found between number of HIV medications and literacy level. Among patients taking only 1–2 HIV medications, 100% of higher literate patients were able to identify their medications, compared to none of the lower literate patients prescribed three or more HIV medications. (Note: Need to look at how many medications in general not just HAART)  Patients with limited literacy skills may lack essential knowledge related to their HIV treatment.

16. Recommended Strategies to Improve Communication  Explain things clearly in plain language  Use a “teach back” or “show me” technique  to check understanding  Effectively solicit questions – DON’T ASK “Do you have any questions?”  Focus on key messages and repeat  Use patient-friendly educational materials to enhance interaction *AMA Foundation

17. Recommended Strategies to Improve Communication  Slow down the pace of your speech  Use plain, non-medical language  “Pain killer” instead of “analgesic”  Use patient’s own terms  Define new terms  Be specific  What does taking medicine “on an empty stomach” really mean?  Avoid concept words  “Hamburger” instead of “red meat”  Use analogies  “Arthritis is like a creaky hinge on a door.”

18. Recommended Strategies to improve Communication  Angina  Atherosclerosis  Benign  Carcinoma  Immunization  Hypertension  “Negative” test  Take one tablet twice daily for seven days  Chest pain  Clogged blood vessels  Not cancer  Cancer  Shot, vaccine  High blood pressure  Normal test  Take 1 pill at 8am & another pill at 8pm for 7 days What could we say instead of… How about….

19. Case Study 1 - John  John is a 65-year-old White man who has sex with men and who presents with anal lesions and rectal bleeding. John’s CD4+ T cell count is for the 3 rd month below 200 cells/mm 3. His viral load is at 2500 copies/mL. An anal Pap smear is performed and shows squamous intraepithelial lesions.  John’s physician assistant, Ms. Gonzalez, plans to refer him for an anoscopy and biopsy. While filling out the necessary paperwork for this procedure, the desk clerk notices that John is having problems completing the forms and leaves several sections blank. The clerk reports this back to Ms. Gonzalez.

20. Case Study 1 - John  Ms. Gonzalez must now speak to John about his low CD4+ T cell count and the possible diagnosis of cancer as well. She starts to counsel John and hands him a brochure that gives more details about AIDS and the importance of self care. John is hesitant about taking the brochure, but places it in his pocket and says that he will read it later. John says he prefers to talk directly to Ms. Gonzalez rather than read a brochure.  Addressing Health Literacy in HIV Care and Treatment : A Collection of Case Studies, AETC Multicultural Care Workgroup Jan 2007

21. Case Study #1 – John Continued  How can Ms. Gonzalez assess John’s health literacy level? Does the fact that he put the brochure away give any clues?  If John has low health literacy, what would be the added challenge to his HIV care and treatment?  How can a provider explain what low CD4+ T cell count means? How can the provider determine John’s adherence to medications?  How can a provider explain the treatment/prevention/risk reduction regimen for HIV infection?  Should members of the office staff be involved in the referral process for biopsy and testing? If so, how?

22. How to Test Health Literacy  Medication review  Ask patient to name and explain purpose of one or two meds  Screening questions  “How often do you have someone help you read hospital materials?”  Formal assessment  Rapid Estimate of Adult Literacy in Medicine (REALM-R)  New Vital Sign (NVS)  Test of Functional Health Literacy in Adults (TOFHLA)

23. Case Study #2 - Theresa  Theresa, a 22-year-old African American female, presents to her primary care physician (Dr. Beal) for enlarged lymph nodes. She reports swelling in her neck for the past two weeks and believes she is experiencing some continuing effects from a “really bad” case of the flu she had two weeks ago. She reports that she is extremely tired, has frequent headaches, and has also had a rash. Addressing Health Literacy in HIV Care and Treatment : A Collection of Case Studies, AETC Multicultural Care Workgroup Jan 2007

24. Case Study #2 - Theresa  The physical exam reveals that Theresa’s inguinal lymph nodes are also swollen. Dr. Beal tells Theresa that her symptoms could be related to a number of things and asks about her last HIV test. She denies a history of ever having an HIV test, adding, “My throat hurts, not my blood, plus I have not lost any weight and I’m obviously not a gay man.” She says she has been with the same male sexual partner for the past four years. She and her partner rarely use condoms because she uses Depo Provera ® injections for pregnancy prevention. She does recall that her partner complained of similar symptoms three months ago but he “got better” after one week. She also says that her boyfriend looks healthy and is not gay.

25. Case Study #2 - Theresa  Discuss the health literacy implications of her statement: “My throat hurts, not my blood, plus I have not lost any weight and I’m obviously not a gay man.”  How can Dr. Beal explain the early signs/symptoms of HIV as well as discuss the risk factors?  Should Dr. Beal encourage Theresa to have an HIV test? Why or Why not? What tactics could be used to initiate the discussion?  Based on the case study discussion, what strategies to address health literacy might you include in an action plan for Theresa’s care?

26. Newest Vital Sign  The Newest Vital Sign is based on a nutrition label from an ice cream container. Patients are given the label and then asked 6 questions about how they would interpret and act on the information contained on the label.  The questions are read to the individual by the provider, the provider has a score sheet.  For more detail and instructions refer to handout.

27. Newest Vital Sign

28. Administering the Newest Vital Sign  Activity  Find a partner One client One clinician  Administer the tool  Process use of the Newest Vital Sign

29. REALM-R  The REALM - R is a medical-word recognition and pronunciation test.  2 min to administer  For more detail and instructions refer to handout.

30. REALM-R Scoring  Score Grade range  Zero = 3 rd grade and below will not be able to read most low-literacy materials; will need repeated oral instructions, materials composed primarily of illustrations, or audio or video tapes.  1-3 = 4 th to 6 th grade will need low-literacy materials, may not be able to read prescription labels.  4-6 = 7 th to 8 th grade will struggle with most patient education materials; will not be offended by low-literacy materials.  7 = High school will be able to read most patient education materials.

31. Administering the REALM-R  Activity  Find a partner One client One clinician  Administer the tool  Process use of the Realm-R

32. Questions and Answers Thank you! Melanie Steilen Patricia Abshier melanie@caiglobal.org pabshier@caiglobal.org