Health Literacy Is Fundamental To Diabetes Education

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Terry Davis, PhDProfessor of Medicine
PediatricsLSUHSC-SCollaborative Diabetes
Education ConferenceJanuary 30, 2009
Health Literacy Is Fundamental To Diabetes
Education Counseling
2
Whats The Problem?
Patients Education, Literacy, Language
Unnecessarily Complex Health Information
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California drop out rate 30
Problems Are Not Going Away
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Low Literacy Rates By County
Adults with Level 1 Literacy Skills
24 California Adults are Level 1
National Institute for Literacy 1998
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Public health emphasis is on getting information
out to people not whether it has been
understood and used. Health care professionals
do not recognize that patients do not understand
the health information we are trying to
communicate.
Dr. Richard Carmona, U.S. Surgeon
General Mentioned health literacy in 200 of
last 260 speeches
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Health Education Needs To Be Improved

• 90 million adults have trouble
• understanding and acting on health
• information
• ? Health information is unnecessarily
• complex
• Patient Education is often NOT
• Easy to read, understand, act on
• Organized from patients perspective
• Focused on behavior as well as knowledge

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What is it Like?

• These instructions simulates what a reader with
  low literacy sees on the printed page
• Read instructions out loud.
• You have 1 minute to read.
• Hint The words are written backwards and the
  first word is cleaning

8
GNINAELC Ot erussa hgih ecnamrofrep,
yllacidoirep naelc eht epat sdaeh dna natspac
revenehw uoy eciton na noitalumucca fo tsud dna
nworb-der edixo selcitrap. Esu a nottoc baws
denetsiom htiw lyporposi lohocla. Eb erus on
lohocla sehcuot eht rebbur strap, sa ti sdnet ot
yrd dna yllautneve kcarc eht rebbur. Esu a pmad
tholc ro egnops ot naelc eht tenibac. A dlim
paos, ekil gnihsawhsid tnegreted, lliw pleh
evomer esaerg ro lio.
9
Cleaning to assure high performance,
periodically clean the tape heads and capstan
whenever you notice an accumulation of dust and
brown-red oxide particles. Use a cotton swab
moistened with isopropyl alcohol. Be sure no
alcohol touches the rubber parts as it tends to
dry and eventually crack the rubber. Use a damp
cloth or sponge to clean the cabnet. A mild soap
like dishwasher detergent will help remove grease
or oil.
10
Low Literate Diabetic Patients Less Likely to
Know Correct Management
Need to Know symptoms of low blood
sugar Need to Do correct action
for symptoms of low blood sugar
Low
Moderate
High
Low
Moderate
High
Percent
Williams et al., Archive of Internal Medicine,
1998
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Video
Its hard to be a patient
Health Literacy An individuals ability to
obtain, process and understand health information
and services and make appropriate health care
decisions and access and navigate the health care
system.
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1st Health Literacy Assessment
n19,000 U.S. Adults
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Proficient
13
Below Basic
53
Intermediate
Hispanic
Basic
22
Average
National Assessment of Adult Literacy (NAAL)
National Center for Educational Statistics, U.S.
Department of Education, 2003.
Medicare
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Health Literacy Tasks

• Below Basic Circle date on doctors appointment
  slip
• Basic Give 2 reasons a person with no symptoms
  should get tested for cancer based on a clearly
  written pamphlet
• Intermediate Determine what time to take Rx
  medicine based on label
• Proficient Calculate employee share of health
  insurance costs using table
• 67 probability individual can perform task

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Medication Error Most Common Medical Mistake
Patient error (gt500,000 adverse events, 1
Billion)

• 3 billion Rx written/year
• Elderly fill 27 Rx/year, see 8 physicians
• Pharmacists/physicians not adequately counseling
• Most labels and inserts are in English only.

IOM 2006 Report Poor patient comprehension and
subsequent unintentional misuse is a root cause
of medication error and worse health outcomes
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Changing Times Healthcare is Increasingly Complex
Todays patients need higher literacy
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• Video
• Its easy to make a mistake.

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How would you take this medicine?
395 primary care patients in 3 states

• 46 did not understand instructions 1 labels
• 38 with adequate literacy missed at least 1 label

(Ann Intern Med. 19 Dec, 2006, Davis, Wolf, Bass,
Parker)
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Show Me How Many Pills You Would Take in 1 Day
71
35
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Is Health Information Unnecessarily Complex?

• Patient Education is often NOT
• Easy to read, understand, use
• Organized from patients perspective
• Focused on behavior as well as knowledge

IOM Report A Prescription to End Confusion, 2004
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Hidden Problems Pamphlets and Videos

• Organized using medical model not
  patient-centered model (focus on need to know and
  do)
• Scientific rather than personal tone (talking
  heads)
• Often too long, written on too high a level
• Illustrations complex, confusing or do not look
  like me
• Lack of attention to tone, patient emotions
• Lack of patient and provider input
• Who will give to patient, when? Teachable moment

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Developing User-Friendly Materials

• Is not rocket science
• But harder and more tedious than it seems

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Avoid a Common Mistake

• Most materials not organized from patients
  perspective
• Medical model
• Description of problem
• Statistics on incidence and prevalence (tables)
• Treatment forms and efficacy
• It is more helpful to use
• Newspaper model
• Gives most important information first
• Social Cognitive Model
• Moves beyond knowledge to short term behavioral
  goals
• Attends to motivation, self-efficacy, problem
  solving

Doak, 1996 Seligman, 2007
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Creating User Friendly Patient Education Materials

• Check reading level (tools, spelling, options,
  readability)
• Aim for lt8th grade
• Ask following 5 questions

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Is The Layout User-Friendly?
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Do Illustrations Convey The Message?
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Is the Message Clear?
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Is The Information Manageable?
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Does Reader See This Is Meant for Me?
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Self-Management Education Is NeededPriority
Area For National ActionCurrent health care
system is not doing the job

• Over 126 million Americans suffer from one or
  more chronic illnesses (healthcare costs gt 1
  trillion/year)
• 90 million adults have trouble understanding and
  acting on health information
• Majority of patients do not receive appropriate
  education or care
• Patient safety may be compromised
• Patients need support for self-management and
  systematic follow-up

IOM Wagner, Chronic Disease Model 1998
Sarkar, 2008
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Effective Self-Management Education

• Must go beyond knowledge and focus on helping
  patient change behavior
• Stress benefits and motivation for behavior
  change
• Incorporate goal setting (best if goals are
  small, short term, easily achievable baby steps)
• Assesses patient confidence
• Offer support and follow-up

Lorig 2003, 2006 Seligman, 2007 Bodenheimer,
2007
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Improving Chronic Disease Education Lessons
Learned

• Develop with patients and
• providers (to help insure
• usefulness, clarity and
• comprehension)
• Focus on need to
• know do vs. nice to know
• Emphasize benefits
• Give to patients in a teachable moment
• Accompany with brief counseling, support and
  follow-up

Seligman, 2007
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Purpose of the ACPF Project

• To develop novel strategies to support diabetes
  self-management among patients with limited
  health literacy.

• Focus on
• Patient not disease
• English and Spanish
• Being user-friendly for
• patients and staff

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Why Focus On Diabetes?

• Diabetes is prevalent
• 23 million Americans have diabetes
• 1.6 million new adult cases each year
• 7th leading cause of death in U. S.
• Substantial self-management is required
• Many patients have difficulty carrying out
  recommended care
• Knowledge alone does not improve outcomes

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Project Team

• National team of diabetes, health literacy and
  communication experts
• Reviewed existing diabetes patient education
  materials
• Conducted focus groups in 5 states in public and
  private sector
• Over 100 patients
• Over 100 providers
• (physicians, D.E.
• nurses, pharmacists,
• and dieticians)

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Writing The Diabetes Guide

• 800 photographs convey messages
• gt70 interviews with patients
• Spanish version with culturally-appropriate photos

El desayuno le ayuda a su cuerpo a sentirse
satisfecho y le da energía. También le ayuda a
controlar su diabetes.
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Lessons Learned From Patients
18 focus groups

• Want information focused on how to manage not
  why
• Want practical strategies for hunger, eating out,
  exercise
• Patients rarely called doctors office for help -
  may not know the questions to ask
• Patients wanted support
• Patients often know more than they do have
  difficulty with problem solving

Seligman, et al. Am J Health Behav 2007 31
(Suppl 1) S69-S78
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Lessons Learned Physicians
9 focus groups

• Want to inform patients on
• severity of diabetes
• associated health risks
• meaning of A1c tests
• importance of checking
• blood sugar regularly

Patients and providers want different information
- Important to consider needs of both.

Seligman, et al. Am J Health Behav 2007 31
(Suppl 1) S69-S78
38
Lessons Learned DM Educators
5 focus groups

• Care is often not coordinated between DM
  educators physician
• Insurance may not pay for diabetes education
• Patient materials often not concise

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Hidden Problems

• Physicians want to teach patients but
• Feel they lack time (reimbursement)
• May give information that is not
• useful
• May overwhelm patients with too much information
  or give too little
• Young physicians often use scare tactics older
  physicians may be fatalistic
• Fear is not effective long term

Seligman, et al. Am J Health Behav 2007 31
(Suppl 1) S69-S78
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The Guide is Focused on Doing!

• Eating
• Exercise
• Monitoring blood sugar
• Keeping track of meds
• Insulin

Most important to patients
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Pictures Help Tell The Story
Too much
Right size
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Photographs Speak to Patients
Our Guide
Standard Guide
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Photographs are Preferred to Clip Art
Standard Guide
ACPF Guide
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Guide Is Patient-Centered

• Warm, conversational tone
• People real, healthy looking

Example Having diabetes is
life-changing. People with diabetes say they
sometimes feel overwhelmed. Some people feel
alone. You are not alone. Millions of people have
diabetes.
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Tone Is Important
Because food intake affects the body's need for
insulin and insulin's ability to lower blood
sugar, diet is the cornerstone of diabetes
treatment. - FDA Diabetes Guide (12th grade
level)

Eating right is the most important way to control
your blood sugar. Your blood sugar is affected by
what you eat, when you eat, and how much you
eat. - ACP-F Guide (5th grade level)
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Our Guide is Practical and Personal

• Patients voices illustrate concrete, practical
  tips
• Patients suggest achievable goals
• Real photos of people with diabetes help tell
  the story

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Focus Is On Doing

• You Can Do It checklist at end of each chapter
• Concrete examples of successful action plans
• Emphasis on small steps and patient choice

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Evaluation Study225 patients, 3 sites, English
and Spanish(76 minority DM 9yrs BMI 36 A1C
8.6)

• Introduce the guide
• Ask Is there anything you would like to do this
  week to improve your health?
• Brief counseling bynon-medical staff to help
  patient set Action Plan
• Follow-up call at 2 weeks
• and 4 weeks, visit at 12-16 weeks

Wallace, Seligman, Davis, Schillinger, Arnold,
DeWalt, et al. In press DeWalt, Davis,
Schillinger, Seligman, Arnold, et al. In press.
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What is an Action Plan?

• Very specific, easy-to-achieve, short-term
  activity a patient chooses to do to reach a
  long-term goal
• Long-term goal lose
• weight
• Action plan I will walk
• around the block before I
• sit down to watch TV after
• dinner 3 times during the
• next 7 days.

Lorig, J Am B Fam Med, 2006.
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Action Plans Can Be Powerful

• Created by the patient (Physician only acts as
  facilitator).
• Magic of a Baby Step
• It doesnt matter what the step is
• Personally relevant and immediate
• Engages patient in self-care
• Increases self-efficacy
• Teaches problem-solving

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Samples of Patient Baby Steps

• I will dance like I saw in the book everyday for
  2-3 songs on the radio.
• I will eat ½ of a candy bar instead of a whole
  one for my afternoon snack 3 days next week.
• Instead of eating fast food every night, I will
  start cooking one night a week.
• Two days a week I will eat sugar free ice cream
  instead of the regular ice cream I normally eat
  every night.

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Significant ImprovementIn Pre- and Post-tests

• Knowledge
• Self-care of diabetes
• Problem solving ability
• Confidence
• Diabetes distress
• Taking ownership of health care

plt0.01
Wallace, Seligman, Davis, Schillinger, Arnold,
DeWalt, et al. In press
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Patients Recalled Action Plans Changed
Behavior And Problem Solved
n250

• Most patients (89) chose diet and exercise
• Equally effective with low and high literacy
  patients

Wallace, Seligman, Davis, Schillinger, Arnold,
DeWalt, et al. In press DeWalt, Davis,
Schillinger, Seligman, Arnold, et al. In press.
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Patient Response To Guide

• Its different from any diabetic material I have
  receivedmore information I wanted to know.
• I love how this book brought things to mind that
  I never thought about like dancing
• Before I felt overwhelmed. It encouraged me to
  just start .to want to do better for myself.

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Goal Setting Lessons Learned

• Chart documentation of self-management goal(s)
  QI performance measure
• Goal setting with a provider was not a familiar
  strategy
• Patients 1st goals too general. I want to lose
  weight
• Assessing confidence helps patients create
  achievable Action Plan
• Many physicians expect too big a step or too many
  steps

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How To Do The 3 StepUsing Guide With Patients

• 1. Introduce Guide
• Ask Is there anything you would like to
  do this week to improve your health?
• 2. Help Patient Set Action Plan Assess confidence
  on 10 point scale (if lt7 - redo)
• 3. Check on progress
• Maintain, modify or set new action plan

Lorig, J Am B Fam Med, 2006 Bodenheimer, Clin
Diabetes, 2007
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Key Point 1The Patient is in Charge

• Patients choose areas motivated to work on
• Patients know what is really tough for them
  what is more doable (e.g. I always crave sweets
  after dinner.)

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Key Point 2 Action Plans are Easy-to-Achieve

• Too often patients feel they are unable to do
  what doctors tell them to do
• Goal make your patients feel good about their
  ability to make healthy behavior changes
• On a scale of 0-10, where 0 is not at all sure
  and 10 is entirely sure, how sure are you that
  you will be able to.
• If lt7 ? REDO!

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Key Point 3 Action Plans are Very Specific

• Help patient turn goal - lose 10 lbs -
• into Action Plan I will walk 2 blocks after
  work 3 times next week
• What Walk
• How much 2 blocks
• When (time of day) After work
• How often 3 times

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• Video
• Action Plans are key to success

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Time Needed For Action Plan Discussion

• Initial AP discussions last an average of 6.9
  minutes
• Patients often need a few minutes to come up with
  a plan confused by the doctor asking them what
  they want to work on
• Steep learning curve down to about 2 minutes
  with practice

MacGregor, J Amer B Fam Med, 2006. Lorig, J Amer
B Fam Med, 2006.
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Baby Steps Lessons Learned

• Focus on small changes helps patients AND
  providers problem-solve and feel positive.
• Baby steps teach skills to change behavior
• Providers appreciate structure of baby step
  approach to patient ed.
• Apply baby step method to their approach to
  patients (and their own lives).

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The Guide Is A Hit

• 40,000 mailed with the Annals of Internal
  Medicine
• gt 1 million copies distributed
• Guide and Action Plan Video Distributed by ACPF
• 877-208-4189
• (ask for Stacey Dailey)
• Box of 40 66
• Video free of charge
• foundation_at_acponline.org        

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7 Steps to Developing User-Friendly Health
Materials

• Review literature and current materials
• Conduct focus groups of patients and providers
• Develop mock up (limit scope to need to
• know and do)
• Improve drafts with iterative
• cognitive interviews
• Continue to tweak mock ups
• Consider distribution
• Evaluate feasibility, efficacy

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Practice Recommendations

• Focus on patients need to know and do vs.
  nice to know
• Use teaching tools (pt ed handouts, brown bag
  meds)
• Help patients create action plans
• Teach back to confirm understanding