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

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

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

HEALTH LITERACY AND HIV/AIDS OVERVIEW

Melanie Steilen, RN, BSN, ACRN

Patricia Abshier, PhD (ABD), MSPH, MSW

CAI

Last updated July 2012

Page 2: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

Disclosure

The following people have no relevant financial, professional or personal relationships to disclose:

Faculty:Patricia Abshier, PhD (ABD), MSPH, MSWMelanie Steilen, RN, BSN, ACRN

Page 3: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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

Page 4: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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

Page 5: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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

Page 6: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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

Page 7: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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

Page 8: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

Comprehension of Medicare

Gazmararian, JAMA 1999

Page 9: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

Health Literacy and Medication

Page 10: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

Health Literacy and Medication

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

Page 11: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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.

Page 12: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

The Prevalence of Limited Health Literacy

N=31,129 subjects from 85 Studies

Page 13: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

HIV/AIDS Related Findings

Health Literacy Indicator Percent of Clients

Read below a 9th grade level 48%

Can't name their medications 33%

Don’t know how to take their medications of those below 9th grade

level66%

Don't know meaning of viral load or CD4 count of those below 9th grade level

75%

N = 157 HIV Positive (Shreveport, LA)

Page 14: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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.

Page 15: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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.

Page 16: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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

Page 17: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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.”

Page 18: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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….

Page 19: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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 3rd month below 200 cells/mm3. 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.

Page 20: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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

Page 21: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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?

Page 22: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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)

Page 23: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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

Page 24: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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.

Page 25: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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?

Page 26: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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.

Page 27: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

Newest Vital Sign

Page 28: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

Administering the Newest Vital Sign Activity

Find a partner One client One clinician

Administer the tool

Process use of the Newest Vital Sign

Page 29: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

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.

Page 30: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

REALM-R Scoring Score  Grade range

Zero = 3rd 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 = 4th to 6th grade will need low-literacy materials, may not be able to

read prescription labels. 4-6 = 7th to 8th 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.

Page 31: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

Administering the REALM-R

Activity Find a partner

One client One clinician

Administer the tool

Process use of the Realm-R

Page 32: HEALTH LITERACY AND HIV/AIDS OVERVIEW Melanie Steilen, RN, BSN, ACRN Patricia Abshier, PhD (ABD), MSPH, MSW CAI Last updated July 2012

Questions and Answers

Thank you!Melanie SteilenPatricia Abshier

[email protected]@caiglobal.org