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Health Literacy ResearchThe Next Generation
Health Literacy CoreNew Orleans
February 20, 2014
Terry Davis, PhDProfessor of Medicine and
Pediatrics
Connie Arnold PhD Associate Professor of Medicine
LSUHSC-S
DISCLOSURE STATEMENT
Research funding:– NIH, LA Clinical and Translational Science Center– Agency for Healthcare Research and Quality – American Cancer Society– American College of Physicians Foundation – National Cancer Institute
Stocks:– Johnson & Johnson– Abbott Laboratories
Why Focus on Health Literacy?
• Health literacy is a focus of national interest • Poor health literacy is a hidden problem in health
research • The majority of U.S. adults struggle with health
information and tasks• Literacy levels in U.S. are getting worse• The demands and expectations of the healthcare
system are increasing
LA ranks 49th in literacy and 49th in overall health (tied with MS) 49th obesity, infant mortality and 48th in preventable
hospitalizations Regina Benjamin, 2010; DHHS, 2007 • United Health Foundation, Department of Education; IOM 2007
Health Literacy and LA CaTS
The ability to obtain, process, understand, and use health information and services to make appropriate health decisionsLow health literacy linked to:
↓ understanding & adherence to med instructions
↓ knowledge, confidence, & skills to manage chronic disease
↓ understanding of consent for procedures & trials
↓ preventive care & services – delayed diagnoses
↓ physical, mental health
↑ ER use, hospitalizations, and readmission
↑ disease related complications and mortality
Davis T, Annals Intern Med, 2006; Sanders L, Arch Pediatr Adoles Med, 2009; Dewalt 2004, 2010 Evidence Based Review; DeWalt DA, J Gen Intern Med. 2004. Chew LD, Am J Surg, 2004; Muslow, Am J Surg. 2012.
Questions for Today
• Is there an imbalance in your patients’ knowledge and skills and the increasing demands needed to manage their health?
• How can we make health information and services easier to understand and use?
• What are promising strategies to improve healthcare communication, patient education and consent materials.
• What are “lessons learned” for your setting?
“Providers do not recognize that patients do not understand the health information we are trying to communicate.”
“Public health emphasis is on getting information ‘out’ to people, not if it has been understood & used.” Dr. Richard Carmona,
Former U.S. Surgeon General
Hidden Problems withHealth Information
* US DHHS, May 27, 2010. (www.health.gov/communication/HLactionplan)
IOM Report (2004)• 90 million adults have trouble understanding and acting
on health informationHealthy People 2010….and 2020
• Improve health communication (plain language materials)Joint commission (2007)
• Patients must be given information they understand
Health Literacy 1st Viewed as Patient Deficit Emphasis Shifts to Health System
DHHS National Action Plan: Road Map to Improve Health Literacy
Aim: Make health information and services easier to understand and use
Goals :
• Develop and disseminate health information that is accurate, accessible, and actionable.
• Promote changes in healthcare delivery system
• Expand culturally & linguistically appropriate health information services in the community
• Build partnerships, develop guidance, change policies
• Increase research, and evaluation of interventions
* US DHHS, May 27, 2010. (www.health.gov/communication/HLactionplan)
Literacy Definition (Requirement) Expands With Increasing Demands Of Society
“…at a level needed to function on the job and in society.”
National Literacy Act, 1991; S. White, Project Director NAALS 2016
Literacy
Judgment/ Interpretation
Problem Solving
Math Skills
Communicate
Low Literacy is a National Problem(National Adult Literacy Survey)
02 0
> 30%
20% to 30%
15% to 20%
< 15%
National Institute for Literacy 1998
% Adults with Level 1 Literacy Skills
• 21% U.S. Adults are Level 1
• 48% level 1 and 2 – “lack sufficient literacy skills to function in society”
• Hispanic – 79%; African-American – 75%
Low Literacy Rates By Parish
% Adults with Level 1 Literacy Skills
National Institute for Literacy 1998
28% Louisiana Adults are Level 139% New Orleans Adults are Level 1
>30%
20%-30%
15% to 20%
< 15%
What is it Like?
• These instructions simulate 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”
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.
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 cabinet. A mild soap like dishwasher detergent will help remove
grease or oil.
47% graduates go on to a 4 year college43% need remedial classes
Only 3 of 5 TOPS students graduate college in 6 years
High school dropout rate: US 23%, LA 29%
1st National Assessment of Health LiteracyAssessed functional skills in clinical, preventive, and navigational tasks
Basic
Below Basic
Proficient
14%(22%)
12%(13%)
53%(33%)
22% (33%)
National Assessment of Adult Literacy (NAAL):National Center for Educational Statistics, U.S. Dept. of Education, 2003.
Intermediate
Average
HS grad
Medicaid
n=19,000 U.S. Adults
Below basic
Hispanic: 41%
Native American: 25%
Adults > 65: 29%
(quantitative literacy)
Health Literacy Tasks
• Below Basic: Circle date on doctor’s appt. 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
152 tasks (28 health related)
Intermediate
Proficient
Below Basic
Basic
Calculation: A Hidden ProblemUnderstanding Food Labels
You drink this whole bottle of soda. How many grams of total carbohydrates does it contain?
67.5 grams 32% answered correctly 200 primary care patients
– 73% private insurance– 67% at least some college– 78% read > 9th grade– 37% math > 9th grade
Rothman R, Am J Prev Med, 2006
Video
It’s Hard to Be a Patient
20
Red Flags For Limited Literacy“You Can’t Tell By Looking”
• May say “I forgot my glasses.”• Incomplete intake forms• Frequently missed appointments• Unable to give coherent, sequential
history• Not taking medications correctly • Ask fewer questions• Lack of follow-through with referrals• May be hesitant to sign forms.
* Health Literacy and Patient Safety: Help Patients Understand – A Manual for Clinicians. 2nd edition. Chicago: AMA Foundation and AMA, 2007. www.ama-assn.org/ama1/pub/upload/mm/367/healthclinicians.pdf
Video
It’s Easy to Make a Mistake
23
Medication Error Most Common Medical Mistake 1.5 M adverse events (patient error >700,000)
2 out of 3 patients leave MD visit with Rx
3.9 Billion Rx filled in 2010
Up 50% - 60% in 10 years
82% adults take at least one med
Elderly fill 20 Rx/year, see 8 physicians
1 in 6 pediatric Rx not dosed correctly
>300,000 OTC meds (>600 contain acetaminophen)
Most labels and inserts are in English only
U.S. Census Bureau, 2009; PDR for Non-Prescription Drugs, Dietary Supplements and Herbs (2007); IMS Health 2005; IOM 2006.
Do Patients Understand How To Safely Take Their Medication?
What Does This Picture Mean?
• “Somebody is dizzy”• “Don’t touch this stuff”• “Take anywhere”• “Chills or shaking”• “Having an experience with God”
1 in 10 Adults Struggle With Decoding
• “Use extreme caution in how you take it”
• “Medicine will make you feel dizzy”
• “Take only if you need it”
8% of patients with low literacy understood this instruction
Rx Label Instructions
Can patients understand how to take meds after reviewing instructions on pill bottles?
Davis, Wolf, Bass, Parker. Ann Intern Med, 2006.
“How would you take this medicine?”
• 46% did not understand instructions ≥ 1 labels
• 38% with adequate literacy missed at least 1 label
• <10% attended to warning labels
395 medicine clinic patients in 3 states48% <9th grade reading, averaged 1.4 meds
Davis, Wolf, Bass, Parker. Ann Intern Med, 2006.
“Show Me How Many Pills You Would Take in 1 Day”
John Smith Dr. Red
Take two tablets by mouth twice daily.
Humibid LA 600MG1 refill
0
20
40
60
80
100
Low Marginal Adequate
Cor
rect
(%)
Patient Literacy Level
Understanding
Demonstration
Rates of Correct Understanding vs. Demonstration “Take Two Tablets by Mouth Twice Daily”
71
35
84
63
8980
Patient Centered Label Can Improve Understanding and Adherence
State Board of Pharmacy in CA passed legislation for this label
Standard Label
PC Label
Understanding 59% 74%
Adherence (3 months) 30% 49%
RCT in 11 FQHCs. 429 pts w DM and/or HTN.Average 5 medsMean age 52, 28% W, 39% low literacy
What I Learned on my 2007 Summer Vacation
A Health Literacy Expert Has A Taste Of Her Own Medicine
When diagnosed, I had to ask cardiologist to write down “What’s my problem? What do you think I need to do?”
Cardiologist’s Note
33
Hindsight: I should have asked my insurance company and LSU bureaucracy these questions
Why Am I Taking These?When and How Long Do I Take Them?
How Do I Space Out Pain Meds?
Which Tylenol?I did not see active ingredient or realize its importance
Challenges When I Get Home:What is my strategy to keep all these meds straight?
“Crazy Cousin Nancy”The Internet Info Queen
• My cousin is a bright woman who lives on the internet; alternative medicine is her thing; she’s retired, lives alone
• She is concerned about me and my prescription meds
• She sends me at least 2 e-mails weekly about supplements, alternative cures for A-fib, mitral valve problems, high cholesterol, problems with Fosamax, acid in my urine, stress (soda in water daily), stop working so damn much – meditate more.
Strategies to Improve Health Communication, Patient Education & Consent
Step 1 – Put yourself in patient’s shoes
3 Problems with Face to Face Communication
1. Patients don’t understand unfamiliar medical terms. Those with low literacy rarely ask for clarification.
• Transcripts of 150 genetic counseling sessions found key terms (that were jargon) were typically repeated 20 times.
• In study of 800 pediatric visits only 1 mother asked for clarification.
2. Many have difficulty understanding and recalling complex information, less satisfied with visit.
• In study of 250 orthopedic patients at 1st post-op visit, 45% knew bone fractured, 19% knew expected healing time, 45% knew weight bearing status.
• In study of 100 surgery patients, 95% of surgeons believed patients understood when to resume normal activities vs. only 58% of patients.
3. Those with low literacy are less likely to actively participate in healthcare dialogue and decision making.
Roter, D. 2011 Nursing Outlook; Korsch, B. Pediatrics 1968; Castro C 2007 Am J Health Behav; Kadakia, J Ortho Trauma, 2013; Calkins Arch Intern Med, 1997.
Solution : “Strip it down, bring it home, mix it up” Easy ways to reduce ‘literacy burden’ in ‘face-to-face’ communication
Strip it down. Limit unnecessary use of jargon and complex language. Goal - engage
patient in conversation that facilitates understanding, establishes rapport and diminishes social distance.
Bring it home. Make health information personally relevant. Make it concrete by
grounding it in the patient’s life. Begin by asking patients what they know.
Mix it up Cut the ‘mini lectures’/monologues. Increase “the back and forth”. Talk less - listen more. Check for understanding, buy in, or questions.
Have normal conversation.Roter, D. 2011 Nursing Outlook
7 Health Literacy Steps to Improve Patient Education
1. Slow down
2. Avoid medical jargon, use living room language
3. Use pictures, teaching tools (pamphlets, brown bag meds)
4. Limit information – write brief take home information
5. Focus on need to know and do
6. Repeat and summarize info
7. ‘Teach back’/’show back’ to confirm understanding
Strategy for Limiting InformationLessons learned from patients
Tell me 3 • What’s wrong? (briefly) (Diagnosis)
• What do I need to do? (Treatment)
• Why is it important that I do this? (Benefit/Context)
If meds – “break it down” for me• What’s it for? (indication)
• When to take? How many pills at a time, how long? (duration)
• Why? (benefit)
• What to expect? (side effects)
Pictures Can be Good Teaching ToolsPatients may not understand or use measurements
Healthy Carbs
Fruits and Veggies
Proteins
Confirm Patient Understanding‘Teach back’ Improves Outcomes
• Ask patients to “teach back/ show back” key messages
• Avoid asking:– Do you understand?– Do you have any questions?
Remember - what’s clear to you is clear to you!
Schilinger, D. Arch Int Med, 2003
What About Research?Literacy is an easy, yet informative variable to add
Years of schooling is NOT a good measure of literacy level (reading comprehension often 2-5 grade levels < education level).
Several tests measure literacy in healthcare research. Some have math sections.
All existing tests measure literacy in health context (i.e. not health literacy).
These formal assessments provide a proxy measure of health literacy and can be used to compare results in the literature.
Patient’s score on literacy test is an indication they may struggle to understand and act on oral or written health information.
Literacy Tests Used in Healthcare Research
• The most commonly used• REALM (Rapid Estimate of
Literacy Medicine)• TOFHLA (Test of Functional
Health Literacy)• NVS (Newest Vital Sign)
• These are sometimes referred to as tests of health literacy
Qualitative:How confident are you filling out medical forms by yourself?
Extremely – Quite A Bit – Somewhat – A Little Bit – Not At All
( 0 ) ( 1 ) ( 2 ) ( 3 ) ( 4 )Tests and ordering instructions are in resources at the end of the presentation.
• Testing patient literacy level alone will NOT confirm ability to understand and act on health information.
• No evidence that literacy testing improves health care delivery or outcomes when testing is done strictly for clinical use.
• To get the most accurate measure of patient’s specific health literacy clinically use “teach back.”
• “Universal precautions” (plain language) are recommended to make materials user-friendly.
Cautions About Assessing Health Literacy Clinically
Health Literacy Research Ideas
Expand technology for patient outreach
– Cell phones for automated calls /texts, EHR mandates
Make health numeracy easier to interpret and act on
Address current health care challenges
– Hospital discharge, health insurance
Add cost effectiveness if possible
Don’t forget your consent form
– Can patients read and understand it
– Is it formatted for reading ease?
– Is the information included manageable or overwhelming?
Are We Prepared?
A Perfect Storm is Approaching
Intersection of declining literacy, increasing immigrant, minority & elderly populations, and the increasing demands of health care & society
What’s Our Bridge to Action?
• How does this talk stimulate your thinking?
• What strategies could LA CaTS develop and test to make health information/ services more user-friendly?
• What research ideas & collaborations does it spark?
Useful HL Resources
IOM Reports on Health Literacy
• Health Literacy: Improving Health, Health Systems, and Health Policy, 07/13• Oral Health Literacy, 02/13• How Can Health Care Organizations Become More Health Literate? 07/12• Promoting Health Literacy to Encourage Prevention and Wellness, 12/11• Improving health Literacy Within a State, 11/11• Health Literacy Implications for Health Care Reform, 07/11• Innovations in Health Literacy Research, 03/11• The Safe Use Initiative and Health Literacy, 12/10• Measures of Health Literacy, 12/09• Health Literacy, eHealth, and Communication: Putting the Consumer First, 03/09• Toward Health Equity and Patient-Centeredness: Integrating Health Literacy,
Disparity Reduction, and Quality Improvement, 02/09• Health Literacy: A Prescription to End Confusion, 04/04
http://iom.edu/Reports.aspx
AHRQ Toolkits(Agency for Healthcare Research & Quality)
• Patient Education Materials Assessment Tool (PEMAT) (2013)www.ahrq.gov/pemat
• Hospital DischargeProject RED (ReEngineered Discharge) (2013) www.bu.edu/fammed/projectred/newtoolkit/
• Informed Consent (2009) www.ahrq.gov/fund/informedconsent
• Health Literacy Universal Precautions (2010) (clinic based system)www.ahrq.gov/qual/literacy/
Pharmacy Assessment Tools and Training
AHRQ (2007) Strategies to improve communication between pharmacy staff and patients training program www.ahrq.gov/qual/pharmlit/pharmtrain.htm
Website Design•HHS (2010) Health literacy online a guide to writing and designing easy to use health web siteswww.health.gov/healthliteracyonline/Web_Guide_Health_Lit_Online.pdf
Resources For Healthcare Organizations
Institute of Medicine (2012) Ten Attributes of Health Literacy Healthcare Organizations iom.edu/Global/Perspectives/2012/HealthLitAttributes.aspx
Health Literacy Environment of Hospitals & Health Centers (2006 ) www.hsph.harvard.edu/healthliteracy/
The Joint Commission (2007) What did the doctor say? Improving health literacy to protect patient safety
National Qualify Forum (2009) Health Literacy a linchpin in achieving national goals for health and healthcare.
Communication Climate Assessment Tool (2010) Wynia M: American Journal of Medical Quality
Health Literacy Websites
CDC• www.cdc.gov/healthliteracy • www.cdc.gov/healthliteracy/pdf/simply_put.pdf NIH• www.nih.gov/icd/od/ocpl/resources/
healthliteracyresearch.htm UNC• www.nchealthliteracy.org/ Rima Rudd (Harvard School of Public Health)• www.hsph.harvard.edu/healthliteracy/Helen Osborne• www.healthliteracy.com/
Patient Education Development
CDC (2013) Clear Communication Index
www.cdc.gov/healthcommunication/ClearCommunicationIndex
CMS (2011) Toolkit for making written materials clear and effective
www.cms.gov/writtenmaterialstoolkit/
NCI (2003) Clear and simple developing effective print materials for low literacy readers
www.cancer.gov/cancertopics/cancerlibrary/clear-and-simple/page1
Seligman HK, Wallace AS, DeWalt DA, et al: Developing low-literacy patient educational materials to facilitate behavior change. Am J Health Behav. 2007 Sep-Oct;31 Suppl 1:S69-78.
Patient Education Materials
www.iha4health.org/default.aspx/MenuItemID/191/MenuGroup/_Home.htm
American College of Physicians
• Helpful Ways To Lose Weight
• Caring For Your Heart
• Live Better With Rheumatoid Arthritis
www.acponline.org/patient_tools
End of Life Decision Making
Volandes AE (2010) Medical Decision Making. 30(1):29-34
• Living With Diabetes
• Living With COPD
List 1 List 2 List 3
fat
flu
pill
dose
eye
stress
smear
nerves
germs
meals
disease
cancer
caffeine
attack
kidney
hormones
herpes
seizure
bowel
asthma
rectal
incest
fatigue
pelvic
jaundice
infection
exercise
behavior
prescription
notify
gallbladder
calories
depression
miscarriage
pregnancy
arthritis
nutrition
menopause
appendix
abnormal
syphilis
hemorrhoids
nausea
directed
allergic
menstrual
testicle
colitis
emergency
medication
occupation
sexually
alcoholism
irritation
constipation
gonorrhea
inflammatory
diabetes
hepatitis
antibiotics
diagnosis
potassium
anemia
obesity
osteoporosis
impetigo
REALM0-18 correct = < 3rd grade
19-44 correct = 4th-6th grade
45-60 correct = 7th-8th grade
61-66 correct = high school
Davis, Fam Med, 1993
S - TOFHLAPASSAGE AYour doctor has sent you to have a ____________ X-ray. a. stomach b. diabetes c. stitches d. germs
You must have an __________ stomach when you come for ______. a. asthma a. is. b. empty b. am. c. incest c. if. d. anemia d. it.
The X-ray will ________ from 1 to 3 _________ to do. a. take a. beds b. view b. brains c. talk c. hours d. look d. diets
THE DAY BEFORE THE X-RAY.For supper have only a ________ snack of fruit, ________ and jelly, with coffee or tea.
a. little a. toesb. broth b. throatc. attack c. toastd. nausea d. thigh
Scoring:
0-16:Inadequate func. HL
17-22Marginal func. HL
23-36Adequate func. HL
Parker, J Gen Intern Med, 1995
NVS
Test has 6 QuestionsFor example:
• If you can have 60 grams of carbs for a snack - how much ice cream can you have?
• Score: 1 point for each correct answer
0-1 Inadequate literacy
2-3 Marginal literacy
4-6 Adequate literacy
Ordering Information
REALM and REALM-Teen tdavis1@lsuhsc.edu
TOFHLA, TOFHLA-Spanish and STOFHLA http://peppercornbooks.com/catalog
NVS http://www.clearhealthcommunication.com/physicians-
providers/newest-vital-sign.html
WRAT http://www3.parinc.com/products/product.aspx
National and State Literacy & Health Data
National Assessment of Adult Literacy• http://nces.ed.gov/naal/factsheets.asp• http://nces.ed.gov/naal/saal.aspUnited Health Foundation• www.americashealthrankings.org/rankings Annie E. Casey Foundation• http://datacenter.kidscount.org/ CDC• www.cdc.gov/healthliteracy/statedata/index.html
64
Helpful References• Institute of Medicine (2004) Health Literacy: A Prescription to End
Confusion. In Nielson-Bohlman L, Panzer A, Kindig DA, eds. Washington, DC: National Academy Press
• Schwartzberg JG (2005) Understanding health literacy: Implications for medicine and public health. AMA Press
• Weiss BD (2003) Health Literacy: A Manual for Clinicians. AMA Foundation
• Doak CC (1996) Teaching Patients with Low-Literacy Skills, 2nd ed. JB Lippincott
• US DHHS (2010) National Action Plan to Improve Health Literacywww.health.gov/communication/HLactionplan
• The Joint Commission (2008) Strategies for Improving Health Literacy from The Joint Commission Perspectives on Patient Safety. The Joint Commission: Oakbrook Terrace, Illinois
Terry Davis, PhDDepartment of Medicine and Pediatrics
LSU Health ShreveportTDavis1@lsuhsc.edu
(318)675-8694
Connie Arnold, PhDDepartment of Medicine and Pediatrics
LSU Health Shreveportcarnol@lsuhsc.edu
(318)675-4324
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