non-adherence or low health literacy: can you tell the difference? darcel reyes, rn, anp-bc, phd (c)...

Non-Adherence or Low Health Literacy:

Can You Tell the Difference?

Darcel Reyes, RN, ANP-BC, PhD (c)1

DisclosureThe following person has no relevant financial, professional or personal relationships to disclose:

Darcel M. Reyes, RN, ANP-BC, AAHIVS, PhD (c)

There are no commercial supporters of this activity.

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Learning Objectives

• Recognize the signs of low literacy in a client with HIV

• Use screening tools effectively to assess for low health literacy

• Implement interventions that will assist the client with self-management of HIV disease

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What is Literacy?

Nielsen-Bohlman, Panzer, & Kindig, 2004

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What is Health Literacy?

“ the degree to which individuals can obtain, process, understand, and communicate about basic health information and services needed to make appropriate health decisions.”

McCormack, et al., 2010

INFORMED

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The National Survey Of Health Literacy found:

Healthliteracyinnovations.com

True or False:

• 1. Most people with low literacy skills are minorities.

• 2. Only those who didn’t finish high school have problems with health literacy.

• 3. Even patients with a well-controlled chronic disease can have limited health literacy.

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What increases the risk of low literacy?• Age greater than 65

• Enrollment in Medicaid, other public insurance or public assistance

• African American race

• Hispanic/Latino ethnicity• Race and Ethnicity as a risk factor decreases as income and

education increases!

• Fluent in a language other than English• CAVEAT: This is country specific! 8

WHY ARE WE CONCERNED ABOUT

LOW HEALTH LITERACY?9

True or False:

• 4. People will rarely tell you if they have problems reading.

• 5. Health literacy is about reading skills.

• 6. Most providers can tell if someone has low health literacy.

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Parikh, et al., 1996

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How is the Health Literacy in your community?

Here is how to find out:

• http://nces.ed.gov/naal/estimates/StateEstimates.aspx.

• http://www.pfizerhealthliteracy.com/physicians-providers/PrevalenceCalculator.aspx#calculator. 14

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PEOPLE LIVING WITH HIV AND

LOW HEALTH LITERACY16

HIV, Health Literacy, and MedicationsIn a study of 157 patients in a community clinic, 48% the participants read below a 9th grade level; one third could not name their HIV medications (p.<.01); two thirds did not know how to take their medications correctly, three quarters did not know the meaning of “CD4 count” or Viral load”

Wolf, et al., 2006

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PLWHA and low health literacy are more likely to:• have negative perceptions of their health care experiences

• perceive their care as poor

• have lower CD4 counts and higher VL• • Have more frequent hospitalizations, but

• Visit healthcare providers on a monthly basis

• Have misconceptions about how HIV is transmitted. Kalichman, 2003; Kalichman, 2008

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PLWHA and low health literacy are less likely to:

• View providers as involving them in decision making

• understand provider explanations of treatment plans and disease processes

• know the meaning of the terms “CD4” and “Viral Load”

Kalishman, 2008

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HIV and Health Literacy• The AIDS Treatment for Life International Survey of 2035

PLWH in 2010 found that:

• 35% of PLWH in North America identified HIV drug resistance as a good thing.• 24% of PLWH in Africa • 16% in Latin America• 14% in Asia• 15% in Europe

• (p< .05) Nachega, et al., 2012, JIPAC 11 (12), 128-133

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PLWHA do not perceive that they are getting adherence messages

Nachega, et al., 2012, JIPAC 11 (12), 128-133

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WHAT’S IT LIKE TO BE A PATIENT WITH LOW HEALTH LITERACY?

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Can you READ this?

Your naicisyhp has dednemmocer that you have a ypocsonoloc. Ypocsonoloc is a test for noloc recnac. It sevlovni gnitresni a elbixelf gniweiv epocs into your mutcer. You must drink a laiceps diuqil the thgin erofeb the noitanimaxe to naelc out your noloc.

It says:

Your physician has recommended that you have a colonoscopy. A colonoscopy is a test for colon cancer. It involves inserting a flexible viewing scope into your rectum. You must drink a special liquid the night before the examination to clean out your colon.

Weiss, 2007

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healthliteracyinnovations.com

CASE STUDIES:

Wise teaches me a lesson. Brian swears he’s taking his once a day regimenHerman’s HIV is under control, what’s up with his BP?Serena brings her medications in.

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Wise• He brings these medications to the visit:

• Fluticasone/salmedrol (Advair)

• Tiotropium bromide (Spiriva)

• Lopressor

• Metoprolol

• Toprol XL

• NO HIV medications (he admits to selling them for pain medicine or illicit drugs)

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Is it drug use or low literacy?• Here are some hints:

• The counter on the Advair is still on 60

• Wise uses the Spiriva without inserting the capsule in the dispenser

• He explains that he has been swallowing the Spiriva capsules

• He is taking the Lopressor, Metoprolol and Toprol XL together

THE WISE SOLUTION

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• Difficulty explaining symptoms

• Use excuses to avoid reading “I forgot my glasses.”

• Have lots of papers folded up together in purse or pocket-important, unimportant, and expired

• Missed appointments

• Difficulty explaining how to take medications

• Take overly long or refuses to fill out forms.28

This is one simple tool to assess for health literacy

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Assess health literacy with four simple questions

Do you like to read?

or

How happy are you with the way you

read?

What is the best way for you to learn new things?

Chew, et al., 2004

How confident are you to fill out medical

forms by yourself?

Chew, et al., 2004

How often do you have problems learning about your health because of difficulty understanding written information?

Chew, et al., 2004

Brian and Emily• Brian cannot read or write, but he has his own

business in home remodeling (numeracy)

• Brian was on a once a day regimen

• Brian insists that he takes his medications faithfully • • New labs show a viral load of >1000

• The genotype showed resistance in all classes

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What’s the problem with Brian?A. Brian was taking his medicine, but is now selling his

medication to finance his business

B. Brian has relapsed

C. Brian is busy with his business, he takes his medications intermittently, creating resistance

D. Brian is taking his medications and the genotype is showing archived mutations

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Brian’s past has caught up with him • These are old mutations

• Because Brian cannot read or write, he has no record of his previous regimens

• Now Brian needs a new regimen consisting of five pills

• Some pills Brian will take twice a day

• Some pills Brian will take once a day

• Emily wants to help Brian 36

The Newest Vital SignGive the patient this Ice Cream

Label Ask these questions and score

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Brian has “visual literacy.” He can identify his medications easily, and you know he has “numeracy” skills

You can use these two skills to help Brain take his new regimen by using the “teach back” strategy.

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WHAT IS “TEACH BACK”?

Herman’s Blood Pressure

• Herman's HIV is under control: his CD4 count is in the 400s, and his viral load is undetectable

• His blood pressure is consistently high

• Herman insists he is taking his medications.

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Why is Herman’s blood pressure so high?

A. Herman is just telling you that he taking his blood pressure medicine because he thinks that is what you want to hear

B. The medicine needs to be changed or increased because it is not working for him

C. Herman believes the medicine is causing ED and ruining his love life

D. Herman can’t read, so he doesn’t know how to take his medicine

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Herman shows you his medicine

Loratadine 10 mg once a day Lisinopril 10 mg once a day

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Serena’s Cholesterol• Serena is adherent to her once a day HIV medication

• Her cholesterol is out of control

• Her diabetes is poorly controlled

• You have changed medications, added medications and sent Serena for nutritional counseling many times

• You decide to do a medication review

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Serena brings in her meds

But that wasn’t all 43

How different do these medications Look to you?

HIV medications look like this:

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What’s a simpler word?• Cellulitis• Lipids• Monitor

• Mutation• Resistance

• Anti-inflammatory• Inflammation

• “the results are negative”

• Skin infection• Fats in blood• Keep track of, keep an eye

on it

• The virus changes• The virus fights the HIV

medicine• Less swelling and irritation• Irritation, swelling,

infection• Normal test

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What are our goals for today?Teach your patient to ask:

•What is my main problem?

•What do I need to do about the problem?

•Why is it important for me to do it? Pfizerhealthliteracy.com

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How much information can people retain?

The experts say people only remember 5-7 bits of information!

Most healthcare visits result in: INFORMATION OVERLOAD

Doaks, Doaks, & Root, 1996

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End your visit with this statement:

I bet a lot of questions have been on your mind as we’ve talked. Tell me 1 or 2 questions you’ve been thinking about.

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True or False:

• 8. Writing material for a 5-6th grade reading level is just “dummying down” the information.

• 9. Most health information is written at a much higher reading level than the average reading ability of patients.

• 10. Well educated people are insulted when given lower level reading material.

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INTERNET HEALTH INFORMATION: AS RELIABLE AS CONVERSATION AT A BAR

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What’s the problem with most health information websites? • The reading level of most are 11th grade

• Use scientific language or medical jargon

• Lots of words!

• People can’t tell the difference between commercial websites, government websites, or research institutions or…

• The difference between advertisements and real information

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How many HIV websites are out there?

GOOGLE: 203,000,000

YAHOO: 134,000,000

BING: 137,000,000

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84% of people start with a search engine

13% start at a health website

2% start at Wikipedia

1% start at a social network

Why is this important?

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How reliable are HIV websites?• A survey of 137 HIV health information websites found:

• 35% did not have a current date within 1 year of the survey

• Only 7% had information reviewed by an expert

• Only 4% had information that was journal referenced

• One website promoted avoidance of HIV medications and provided anecdotal stories of cures without HIV medications

Horvath, Harwood, Courtnay-Quirk, McFarlane, Fisher…Rosser, 2011

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Results of a study of PLWH and high health literacy who used the internet showed that :

• Believed that HIV did not cause AIDS

• Scientist were still debating the cause of AIDS

• There were herbal and natural cures for HIV and AIDS

• Experienced more HIV symptoms, had less adherence to treatment regimens, and were less likely to be undetectable

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What makes a website reliable?

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Some Tips:• KISS • Keep It Short and Simple

• Pictures speak louder than words

• Personalize, don’t Generalize!

• See it, hear it, and do it and repeat it!

• Safest internet sources: .gov, .edu, and .org, and sites with a HON designation

• Literacy is the latest vital sign!

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Review Questions

What are some of the RED FLAGS of low health literacy?

1. Refusing to complete forms2. Asking a lot of questions3. Difficulty describing symptoms4. Items 1 and 3 only

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Review Questions

Health literacy can be assessed by:1. Determining the patient’s reading

level2. Using the Newest Vital Sign3. Asking 4 simple questions4. All of the above5. 2 and 3 only

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Health Literacy Resources• http://www.ahrq.gov/qual/literacy/healthliteracytoolkit.pdf• http://nchealthliteracy.org/communication.html• http://www.healthyroadsmedia.org/index.htm• http://www.cms.gov/WrittenMaterialsToolkit/

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Parting Words

“The illiterate of the future will not be the person who cannot read. It will be the person who does not know how to learn.”

Alvin TofflerFuture Shock

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Thank You!

Darcel Reyes, RN, ANP-BC, PhD (c)Darcel.reyes@rutgers.edu

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