Transcript Health Literacy Adherence and Retention

Health Literacy
Adherence and Retention Interventions
Evelyn Bradley, DrPH
Daniel Tietz
Eileen Sheridan
Altricia Belk
November 28, 2012
Ryan White All-Grantees Meeting
Washington, DC
Good Morning!
AGENDA
• Introductions
• Proposed retention/self-management tool
(multi-media education program)
• 3 Adherence Interventions
• Q&A on any health literacy topic
Introductions
• Presenters
• Session purpose
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELF-MANAGEMENT
Evelyn Bradley and Daniel Tietz
•Multimedia education programs (MMEP) use
a variety of media to communicate educational
information:
•Live actors
•Pictures
•Text
•Sound
•Animation
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELFMANAGEMENT
Evelyn Bradley and Daniel Tietz
•MMEPs are effective health education
tools…for people with varied literacy skill levels.
•Research showed that exposure to a plain
language diabetes MMEP increased patients’
understanding of diabetes…no matter what their
literacy competence.
Kanula, Namratha et al, The relationship between health literacy
and knowledge improvement after a multimedia type 2 diabetes
education program, Patient Education and Counseling, 75 (2009),
321-327.
Knowledge improvement based on
exposure to diabetes MMEP
Questions
answered
correctly
16
12.6
14
12
10
7.5
10
6.5
8
Before
After
4.3
6
2.6
4
2
0
Inadequate Literacy
Marginal Literacy
Adequate Literacy
6
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELFMANAGEMENT
Evelyn Bradley and Daniel Tietz
• Let’s take a look
• http://cch.northwestern.edu/edtools/diabetes
.htm
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELFMANAGEMENT
Evelyn Bradley and Daniel Tietz
• What makes this MMEP effective?
• Plain language
• Effective media per message
• Brief (maximum 5-7 minutes)
• Images are powerful and accessible
• No need to be able to read
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELFMANAGEMENT
Evelyn Bradley and Daniel Tietz
• What else might we like to see in an HIV
MMEP?
– Teach-back
– Linkages to other segments
– Comprehensive, covers all key messages whatever
the person’s place along the continuum.
• Northwest has developed 7 diabetes segments.
• We will probably need more for HIV.
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELFMANAGEMENT
Evelyn Bradley and Daniel Tietz
MMEP PROCESS
•As part of a National Quality Center
Fellowship, I looked for comparable HIV
MMEPs.
•I found some, but no HIV MMEPs had it all!
•I started to design an HIV MMEP.
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELFMANAGEMENT
Evelyn Bradley and Daniel Tietz
MMEP PROCESS (continued)
•The diabetes researchers started by identifying
17 key messages people needed to understand
the disease.
•I read HIV health education materials, and
identified 400 messages given to PLWH/A!
•To select the key HIV messages:
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELFMANAGEMENT
Evelyn Bradley and Daniel Tietz
MMEP PROCESS (continued)
•A dozen motivated experts convened this past
February…PLWH/A, HIV PMC providers, educators,
health literacy professors, and media experts, who
provided feedback on both:
•Key HIV messages
•The most effective media
•To explain the HIV MMEP to prospective funders
willing to develop the MMEP, I developed
storyboards: graphic illustrations of proposed
content.
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELFMANAGEMENT
Evelyn Bradley and Daniel Tietz
HIV MMEP Structure—10 Segments or “clips”
HIV and Me*
New to HIV*
HIV-Positive*
•How People Get HIV*
•HIV in the Body*
•How HIV Medication Works
•Managing HIV*
•HIV and Real Life*
*Starred segments have storyboards
•Untreated HIV
•HIV Disclosure
Index—list of clips, with links
Resources—list of resources, with links
MULTIMEDIA EDUCATION TOOLS FOR RETENTION AND SELFMANAGEMENT
Evelyn Bradley and Daniel Tietz
SAMPLE STORYBOARD
•Think about whether a video like this would
be useful to you as a teaching aid, or helpful for
your clients to view.
•When the MMEP is produced, live people will
act out this segment. For other segments,
animation will work better.
Newly-HIV+
Storyboard of HIV MMEP segment
Introduction and links for newly-diagnosed PLWHA
Messages:
•Confusion after diagnosis is normal
•First thing, get a doctor on your team
•How to find a doctor
•HIV is an incurable virus
•HIV can be managed
•There are serious consequences If HIV is not managed
•AIDS is the final stage of HIV
•HIV is usually spread through shared needles, unprotected sex, or from
mother to infant
•Take precautions, even if you are HIV-positive
•Links to web resource for finding a doctor, segment list, resources
•Links to other clips: How People Get HIV , HIV in the Body, HIV
Disclosure Talk , How HIV Medication Works, Managing HIV, HIV and
Real Life
Newly-HIV+ (2/23)
John Smith here. If you just found out you have HIV there’s a lot you’ll want to
know. I remember. Lots of questions. We’ll get to them. First thing you need
to know. HIV has no cure. But people who manage HIV can live a long time.
We’ll talk about how.
John, Tamara, and Dr. Patel are all filmed…real people.
Newly-HIV+ (3/23)
HIV Clip List— Resources
If you want to see what I’m saying, click on the eye. If you want to turn off the
sound, click on the ear. The “home” button starts this clip again. There’s a link
in red to a list of the HIV clips in this series, and a link to other resources.
Curser travels to the items he mentions.
Newly-HIV+ (4/23)
HIV Clip List— Resources
I want you to meet Tamara Tate. Recently, she found out she’s HIV-positive
Live action John fades out—Tamara fades in.
Newly-HIV+ (5/23)
HIV Clip List— Resources
Last year when I found out I was positive, I freaked. What do I do now? What
is HIV/AIDS? How did this happen to me? What will happen to my body? Am I
going to die? Who’s going to know? Who should I tell?
Newly-HIV+ (6/23)
HIV Clip List— Resources
I said to myself, hold on…one thing at a time. First thing, I got linked with a
good doctor. One I could talk to and who listened. I was lucky, ‘cause Doctor
Patel knows a lot about HIV. First thing to do is find a doctor. Don’t worry
about the money. If you don’t have much money, doctor visits and medication
for HIV are free. If you don’t have a doctor, click on the HIV Docs button.
Newly-HIV+ (7/23)
HIV Docs
HIV Docs
HIV Clip List— Resources
HIV Docs button appears, moves to side, shrinking. This button links to
http://findhivcare.hrsa.gov/Search_HAB.aspx
Tamara: No worries if you don’t have money for a doctor. No worries if you
don’t know a doc. You can also call the city or state health department. The
phone operator can give you the number.
Newly-HIV+ (8/23)
HIV Docs
HIV Clip List— Resources
Doctor Patel comes in to view, shakes hands
Patel: Hello Tamara.
Tamara: I remember when we first met.
Action now shifts to the past…indicate this in some way…eg. picture gets wavy,
and scene changes to a flashback to Dr. Patel’s office.
Newly-HIV+ (9/23)
HIV Docs
HIV Clip List— Resources
Patel: Good morning, Tamara, I’m Doctor Patel. We’ll work together to
manage your HIV. I know you’re worried. I want you to know HIV is not a
death sentence. With care, you are likely to have a long life. What’s worrying
you most?
Newly-HIV+ (10/23)
HIV Docs
HIV Clip List— Resources
Tamara: Well I don’t know how I got HIV, and I don’t know what it is, and my
Mom’s going to kill me when she finds out, and I think I’m going to die.
Patel: Your worries are normal. One thing at a time.
Newly-HIV+ (11/23)
HIV Docs
HIV Clip List— Resources
Patel: Let’s start with what HIV is. HIV is a virus. Flu is another virus, but HIV
is different from flu. It’s with you for life. It doesn’t go away. There’s no
vaccine and no cure. Also, if you and I together don’t control HIV, it does
more damage than flu. HIV makes your body weak. Because your body is
weak, you can get cancer or pneumonia or other bad diseases. HIV in the Body
has more information.
Newly-HIV+ (12/23)
HIV Docs
HIV in the Body
HIV in the Body?
HIV Clip List— Resources
HIV in the Body button starts at center and moves to one side, shrinking
Newly-HIV+ (13/23)
HIV Docs
HIV in the Body
HIV Clip List— Resources
Tamara: OK, that’s HIV, but what about AIDS?
Patel: AIDS is the final stage of HIV. It’s not a different virus. If people don’t
take their HIV medication. the HIV virus multiplies. HIV attacks defender cells
in the immune system. This makes it harder for you to fight off other
infections and cancers. That’s called AIDS.
Newly-HIV+ (14/23)
HIV Docs
HIV in the Body
How People
Get HIV
HIV Clip List— Resources
Tamara: Thanks, that’s a help
Patel: What do you want to know now?
Tamara: Well, I don’t know how I got infected
Patel: There are two main ways adults get HIV. One is by having sex without a
condom. The other is by sharing needles. HIV can also be passed from a
mother who is expecting or nursing to her baby. How People Get HIV tells
how HIV spreads.
Newly-HIV+ (15/23)
HIV Docs
HIV in the Body
How People Get HIV
HIV Clip List— Resources
Tamara: I could have gotten it through sex or a needle.
Patel: Whichever way you got HIV, you need to be very careful now to keep
yourself safe. Even though you have HIV, you don’t want to get a different type
of HIV. Be careful with needles and sex. Don’t share needles. Make sure sex
partners always use condoms. That way you have a low risk of getting another
strain of HIV—and a lower risk of infecting someone else.
Newly-HIV+ (16/23)
HIV Docs
HIV in the Body
How People Get HIV
HIV Clip List— Resources
Patel: Any other concerns today?
Tamara: I’m worried everyone will find out I have HIV
Newly-HIV+ (17/23)
HIV Docs
HIV in the Body
How People Get HIV
HIV Clip List— Resources
Patel: That’s a big worry. Telling people you are HIV-positive is “disclosure.”
Disclosure needs some thought. You should only disclose to people you trust –
people whose support you need. Your sex and needle sharing partners can get
HIV from you even if you don’t feel sick, so I need to contact them about their
risk. But I won’t use your name.
Newly-HIV+ (18/23)
HIV Docs
HIV in the Body
How People Get HIV
HIV Disclosure
Talk
Disclosure Talk
HIV Clip List— Resources
Patel: No disclosure answer is right for everyone. But here’s a button to a clip of
HIV-positive folks talking disclosure issues. Don’t let disclosure fears keep you
from getting medical help. The health department knows you have HIV and is
there to help. So go ahead and get treated.
Newly-HIV+ (19/23)
HIV Docs
HIV in the Body
How People Get HIV
HIV Disclosure Talk
Managing HIV
Managing HIV
HIV Clip List— Resources
Tamara: What are we going to do next?
Dr. Patel: At our next visit, we’ll talk about managing your HIV. To the camera…If
you want to know more, click on the Managing HIV button
Newly-HIV+ (20/23)
HIV Clip List— Resources
Tamara: Thanks Doctor Patel, we covered a lot of ground. See you next visit.
Scene shifts back to the present…indicate this in some way. Tamara speaks to
the camera….Here are a few questions to help you figure out whether to go
back and listen again. It’s not a test. It’s just for you. Click on the answers
you think are right. I’ll be back after the review questions.
Newly-HIV+ (21/23)
Will HIV kill me?
Yes
If you manage it you can live a long time
When you find out you have HIV, first…
Don’t panic
See an HIV doctor
Believe you can manage HIV
Questions are read out-loud…as each response is read, answers are given
immediately, with an explanation.
Newly-HIV+ (22/23)
What is HIV?
A bug
A virus that doesn’t go away
A punishment
How do people get HIV?
Usually sharing needles or through sex
From the air
From the water
Newly-HIV+ (23/23)
How HIV medication Works
HIV and Real Life
HIV Clip List— Resources
Tamara: I hope hearing my story helps you. At my next visit, Dr. Patel will talk
about taking HIV medication. There’s a lot more to learn. You can follow that
journey by clicking on How HIV Medication Works. When I joined a group of HIVpositive people I met some with problems that get in the way of managing HIV.
There’s more about that in the HIV and Real Life clip. Good bye…and take care of
yourself.
MULTIMEDIA EDUCATION TOOLS FOR SELF-MANAGEMENT
Evelyn Bradley, Baltimore City Health Department
•Do you think a MMEP will help your clients?
•Suggestions?
Shifting Gears
Adherence Tools
• History
• Tools:
– Presentation: Take Your HIV Medicine on Time and
Every Day
– CD4/VL Chart
– Pill Card
Take Your HIV Medicine on Time and
Every Day
• Purpose: to convey WHY it is important to
take HIV medicine on time and every day.
• Series of illustrations with few words—plain
language.
• Can be modified for specific clientele
• Client offered a copy to take home.
• Next: a few sample pages
If you take your medicine ON TIME and EVERY DAY, you
keep enough medicine in your blood to defend you, and you will
usually feel better.
42
• After illustrations that “Non-adherence may
lead to resistance, and you may need new
medicines”…
The new medicines may
be hard on you,
And you and your doctor may
run out of medicines that work.
?
44
CD4/VL Chart
Designed by Case Managers at Queen Annes
County Health Department
• Purpose:
– Allows clients to see track their progress on both
CD4 and VL on one page
– Provides goals (“good” ranges)
– Discussion tool for clinicians/case managers
Pill Card
Based on material in the
AHRQ Health Literacy Toolkit
Purpose: Give clients a reminder of when to
take their medication. The pill card is
customized to show the client’s specific
medications.
Sample Pill Card:
http://www.ahrq.gov/qual/pillcard/pillcard.htm
Adherence Tool Exercise
• Form Teams
• One team member:
– Read “Take Your HIV Medication on Time Every
Day” to another team member.
– Ask 5 questions to determine whether the
material was understood.
• Other team members observe.
• Re-convene with larger group to discuss.
Discussion
PILOT—PLAIN LANGUAGE ADHERENCE TOOLS
Eileen Sheridan-Malone and Altricia Belk
Johns Hopkins Medical Center High-Risk GYN Clinic
•Lack of adherence has grave consequences for
pregnant women with HIV and their babies.
•Working with Evelyn as part of an National
Quality Center Fellowship, we participated in a
quality assurance pilot to increase adherence
•We used Dr. Barakat’s presentation, which we
were able to modify for our population of
young, primarily African-American women, and
the CD4/VL chart
PILOT—PLAIN LANGUAGE ADHERENCE TOOLS
Eileen Sheridan-Malone and Altricia Belk
Johns Hopkins Medical Center High-Risk GYN Clinic
PROCESS
•The adherence tools were worked in with
other components of our adherence
program which includes:
•identifying barriers to adherence,
•setting up cell phone reminders,
•phone calls,
•home visits.
PILOT—PLAIN LANGUAGE ADHERENCE TOOLS
Eileen Sheridan-Malone and Altricia Belk
Johns Hopkins Medical Center High-Risk GYN Clinic
•We work as a team, with one person
responsible for note taking and preparing
materials, the other presenting the
materials.
•The patients have our undivided
attention…a quiet, private, neat room, with
flowers and no distractions…time for
questions.
PILOT—PLAIN LANGUAGE ADHERENCE TOOLS
Eileen Sheridan-Malone and Altricia Belk
Johns Hopkins Medical Center High-Risk GYN Clinic
•At the client’s first visit we 1) ask pre-questions,
2) show Take Your HIV Medicine…, and 3) ask
post-questions, 4) send home a copy of Take
Your HIV Medicine…
•At the second visit, we ask follow-up questions
(Did you review the materials we sent home with
you? Have you missed any doses?) and introduce
the CD4/VL chart. By then we have two CD4 and
VL data points to show progress.
PILOT—PLAIN LANGUAGE ADHERENCE TOOLS
Eileen Sheridan-Malone and Altricia Belk
Johns Hopkins Medical Center High-Risk GYN Clinic
•We found that covering the 2 interventions
(Take Your HIV Medicine… and the CD4/VL
chart) including the data collection/teach-back
takes 10-15 minutes.
•Although we liked the pill card and had hoped
to pilot it, due to staffing and patient visit time,
we did not. It takes time to prepare the card
for each client, and we did not want to
overwhelm clients with TMI.
PILOT—PLAIN LANGUAGE ADHERENCE TOOLS
Eileen Sheridan-Malone and Altricia Belk
Johns Hopkins Medical Center High-Risk GYN Clinic
ASSESSING IMPACT
•For each of the adherence interventions we had
data collection tools, asking a few brief questions
before and after exposure to interventions.
•The data collection tools also support “teachback.” For example, we asked five questions before
and after showing Take Your HIV Med…:
•Following the post- questions, we went over any
errors.
PILOT—PLAIN LANGUAGE ADHERENCE TOOLS
Eileen Sheridan-Malone and Altricia Belk
Johns Hopkins Medical Center High-Risk GYN Clinic
Observations
•Many clients did not know all of the basic
information included in Take Your HIV Medicine
on time and Every Day (e.g. CD4 and VL).
•The cartoons and simple words in that
presentation were an effective way to
communicate basic information.
•Clients needed to understand WHY it is so
important to take HIV medicine every day and
on time.
PILOT—PLAIN LANGUAGE ADHERENCE TOOLS
Eileen Sheridan-Malone and Altricia Belk
Johns Hopkins Medical Center High-Risk GYN Clinic
•Clients like to watch their VL values drop.
•Clients appreciate the materials. For many it
seems to be new knowledge (e.g. keeping
medication blood level even).
•Clients are very excited when they see (on the
CD4/VL chart) that their lab values are improving.
•Our clients move to other sources of care
following delivery. Follow-up is needed…are
adherence results temporary, reflecting concern
for baby? Will they continue?
PILOT—PLAIN LANGUAGE ADHERENCE TOOLS
Eileen Sheridan-Malone and Altricia Belk
Johns Hopkins Medical Center High-Risk GYN Clinic
Recommendations:
•The tools are valuable assets to clients’
understanding HIV and subsequent adherence. We
recommend their use.
•Obtain date of diagnosis…we saw that a number of
people had been HIV+ for quite a while, but still did
not have even basic understanding of HIV—for
example of the difference between a CD4 and Viral
Load.
•Track data over a longer time frame than 3-8 mo.
Shifting Gears
Q&A
Presenter Contact
• Evelyn Bradley: 410-821-1609
[email protected]
• Daniel Tietz: [email protected]
• Eileen Sheridan-Malone: [email protected]
• Altricia Belk: [email protected]