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Health Literacy:Costs, Consequences, and Clinical ImplicationsPeggy Sissel-Phelan, Ed.D.Community Health Centers of Arkansas Annual ConferenceJune 14 – 15, 2010

Defining LiteracyAn individual’s ability to read, write, and speak English, and compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one’s goals, and develop one’s knowledge and potential.Workforce Investment Act (1998) The ability to use printed and written information to function in society, to achieve one’s goals, and to develop one’s knowledge and potential. National Assessment of Adult Literacy (2003)

Literacy Needs in ContextHistoric PerspectivesMultiple meaningsChanging measures20th Century Changes1900 – 1950’s . . . . . . . . Industrialization 1960’s . . . . . . . . . . . . . . Space race1970’s . . . . . . . . . . . . . . International development1980’s . . . . . . . . . . . . . . Technological advancement1990’s . . . . . . . . . . . . . . Globalization

Assessing Literacy 2003National Assessment of Adult Literacy(NAAL)19,000 adults ages 16+107 incarcerated 1992National Adult Literacy Survey (NALS) 16,000 adults ages 16+1,000 incarcerated

MethodologyNAALTested literacy tasksProse, Document, and Quantitative 5 reading skill levelsBelow BasicBasicIntermediateProficientNot literate in EnglishHealth Literacy Component NALSTested literacy tasksProse, Document, and Quantitative 5 reading skill levelsLevel 1 – approx. 1st gradeLevel 2 – approx. 4th gradeLevel 3 – approx. 8th gradeLevel 4 – approx 12th grade Level 5 - College

Results 2003 NAAL 14% Below Basic29% Basic43% at Basic or Belowplus5% not literate in English =97 million U.S. adults1992 NALS 23% Level 128% Level 2 51% at Level 1 or 2 =90 million U.S. adults

NALS and CommunitiesState by State Extrapolation1992 NALS results synthesized with 1990 census dataLate 90’s Findings ReleasedStateCongressional DistrictCounty CityArkansas

Note: Level 1 equates to about 1st grade reading skills

Estimated Adults at Level 2 Literacy Skills or BelowNumber of CountiesNote: Level 2 equates to about 4th grade reading skillsn = 3n = 8n = 19n = 29n = 12n = 3 43-45% 46-51% 52-59% 60-69% 70-79% 80-89%

Percentage of Adults in Arkansas Towns at Level 2 or BelowFayettevilleSherwoodArkadelphia Bentonville Conway Fort SmithJacksonville Jonesboro Benton MagnoliaN. Little RockParagouldVan Buren BlythevilleCamdenEl DoradoHot Springs Forrest CityPine Bluff30-39% 40-49% 50-59% 60-69%70-79% Little Rock Rogers RussellvilleSearcySpringdale StuttgartTexarkanaW. Memphis

Literacy Across Generations: ArkansasBelow or Below Basic Literacy SkillsPercent1009080706050403020100ChildrenParents/AdultsChildren whose parents have low literacy skills are more likely to become adults with low literacy skills than children whose parents are good readers. Thomas Sticht, 2002

Literacy Across Generations: Arkansas Basic or Below BasicParents/Adults 8th Graders City 32% 34% Fayetteville 44% 37% Bentonville 48% 40% Springdale 42% 46% Conway 44% 50% Jonesboro 42% 57% Rogers 46 % 55% Searcy 50 % 58% Benton 49 % 61% ArkadelphiaNote: Parents data derived from National Adult Literacy Survey, 1992Students data derived from National Assessment of Educational Progress, 2002

Basic or Below Basic Parents/Adults 8th Graders City 46 % 70% Little Rock 59% 58% Magnolia 58% 68% Paragould 54% 77% North Little Rock 63% 69% El Dorado 64% 70% Blytheville 62% 83% Texarkana 71% 92% Pine Bluff 78% 90% Forrest CityLiteracy Across Generations: Arkansas

Almost half of U.S. adults lack the basic skills needed to function successfully in society.These Adults Can Not:Find which foods contain a specific vitamin

Identify a specific location on a map

Interpret a growth chart or tableFunctional illiteracy impedes health and economic well-being. Practical Implications

Perspectives ofHealth Literacy Levels of Literacy Skills & Health?Levels of Understanding & Health? ChronicAcuteSystemic

PreventativePerspectives ofHealth Literacy Levels of Literacy Skills & Health?Chronic – persistent in daily livingSystemic – resistance and culture of medical settingsLevels of Understanding & Health? Acute – situationalPreventative - cultural

Defining Health LiteracyROLELEVELACTIONEXPECTATIONThe ability to read and comprehend prescription bottles, appointment slips, and the other essential health-related materials required to successfully function as a patient. (AMA Council of Scientific Affairs, 2000) The degree to which individualshave the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. (Ratzan and Parker, 2000)

Defining Health LiteracyROLE LEVELACTIONEXPECTATIONThe ability to read, understand, and act on health care information. (Healthy People 2010, US Department of Health and Human Services, Office of Disease Prevention and Health Promotion, 2000, )The ability to use printed and written information associated with a broad range of health-related tasks to accomplishone’sgoals at home, in the workplace, and in the community (includinghealth care settings). (NAAL, 2003)

Defining Health LiteracyROLE ROLELEVELACTIONEXPECTATIONHealth literacy allows the public andpersonnel working in all health-related contextsto find, understand, evaluate, communicate, and use information. Health literacy is the use of a wide range of skills that improvethe ability of people to act on informationin order tolive healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills. (Calgary Charter on Health Literacy, 2008)

Defining Health LiteracyROLE ROLELEVELACTIONEXPECTATIONHealth literacy allows the public andpersonnel working in all health-related contextsto find, understand, evaluate, communicate, and use information. Health literacy is the use of a wide range of skills that improvethe ability of peopleto act on informationin order to live healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills. (Calgary Charter on Health Literacy, 2008)* The interconnected expectation of improving ability to act as a result of being health literate does not address key resource and access issues (distance, price, cultural norms, living conditions, personal constraints)

Defining Health LiteracyROLE ROLELEVELACTIONEXPECTATIONHealth literacy allows the public andpersonnel working in all health-related contextsto find, understand, evaluate, communicate, and use information. Health literacy is the use of a wide range of skills that improvethe ability of peopleto act on information in order to live healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills. (Calgary Charter on Health Literacy, 2008)* Not simply being acted upon as the subject of care, but empowering individuals to address their own, and others’ health as a “partner” with health care providers and systems.

Health Literacy Needs in Context Changes in Care35 yrs. ago Today Treatment of Acute 4 - 6 weeks bed 2-4days Myocardial Infarction rest in hospital in hospital # Prescription Drugs 650 10,000 +on the market Treatment of new 3 weeks +/- outpatient onset Diabetes in hospital classes 0-3 hrs. 2 hours a day of diabetic classesSource: Balydon, Glusman, and Sharkey-Asner, 2009For Reach Out and Read Illinois

NAAL Health Literacy Component Health literacy and relationship to prose, document, and quantitative skill.Address deficiencies in health literacy skillsPoliciesProgramsDevelopment of appropriate health information Health Literacy Component

Health Literacy ComponentNAALData on target audiences Relationship between health literacy and educational attainmentagerace/ethnicity where adults get information about health issues, and health insurance coverage

Health Literacy ComponentQuestion typesClinicalNavigationPreventiveAssessment MethodsPerform a task (circle word)Decode words (read instructions)Locate words or section (review and respond)Interpret (infer applicability)

Elements of Health LiteracyAccessing health care systemLevels of existing health informationLocating information Understanding rights/responsibilitiesDecoding information Making inferences about care needsCarrying out directives Formulating questionsInterpreting Oral information

NAAL Results Low Health Literacy: Social CharacteristicsReports poor health1 or more disabilitiesNo health insurance or MedicaidFewer preventive health measuresLower Educational AchievementGets no health information from the Internet

NAAL Results Low Health Literacy: Social CharacteristicsPovertyRacial and ethnic minoritiesEnglish as a Second LanguageSingle Parent FamiliesOlder adults Prison inmates

Consequences of Low LiteracyAccessMisunderstanding DiagnosisUnable to Read Patient Education MaterialsUnderstanding and Following Health Related Instructions, compliance issues

Low Literacy Affects AccessLocating, obtaining, navigatingie: 84% of Medicaid patients do not understand rules and regulations of the application formAdhering to and accepting careWhile still in the clinic 26% did not understand when return appointment was scheduledCultural and beliefs stress no need for careFeelings of rejection, abuse, by health care staff

Consequences of Low LiteracyMedication ErrorsPoor Outcomes2 x more likely to be hospitalized Higher rates of medication and treatment errorsLink: Low literacy, poor health, and early deathRelated factors: housing, diet, addiction, violence

Costs$38 -53 billion in unnecessary costs annually (Center for Health Care Strategies, Inc, 2001)$73 billion (Friedland, Georgetown University, 2003)$106-$236 billion (Vernon, University of Connecticut, 2007)Medical costs for adults with low literacy skills are four times the national average - $21,760.

You Can’t Always TellIn the Below Basic Literacy Group37% have a HS or some college education52% speak only English54% have no physical or mental disabilitiesKutner M et al, Nat Center for Educ Statistics 2005

The Stigma Patients who have never told: %Supervisor 91%Spouse 68%Children 53%Anyone 19%Parikh N, et al., Patient EducCouns, 1996.

How Does It Feel?The following passage simulates what a reader with below basic general literacy sees on the printed page.Read the entire passage out loud.You have 1 minute to read.Hint: The words are written backwards and the first word is “cleaning”

How Does It Feel?GNINAELC – Oterussahgihecnamrofrep, yllacidoirepnaelcehtepatsdaehdnanatspacrevenehwuoyecitonnanoitalumuccafotsuddnanworb-red edixoselcitrap. Esu a nottocbawsdenetsiomhtiwlyporposilohocla. Eberus on lohoclasehcuotehtrebbur strap, satisdnetotyrddnayllautnevekcarcehtrebbur. Esu a pmadtholcroegnopsotnaelcehttenibac. A dlimpaos, ekilgnihsawhsidtnegreted, lliwplehevomeresaergrolio.

How Does It Feel?How do you clean the capstan?

Red Flags: What to Look forUnable to name medications, or explain purpose or timing of administrationDifficulty explaining medical concernsDetour, letting doctor miss the concernHave no questionsIncomplete registration formsFrequently missed appointmentsSkipped tests and referralsNon-compliant with meds

Red Flags: What to Look forSeeking help only when illness is advanced Walking out of the waiting roomBecoming angry, demandingClowning around, using humorBeing quiet, passiveMaking excusesPretending they can read

Or . . “I forgot my glasses. I’ll read this when I get home.”“Let me bring this home so I can discuss it with my husband.”

Strategies: Make ChangesLessen stigma: Approach all patients the same wayBe non-judgmental.There is no one correct way to askThere are natural times in the history during which you can bring this upNever ask “do you have questions”Use, what kind of questions do you have?

Strategies: Enhance CommunicationAttitude of helpfulness, caring and respect by all staffConduct patient-centered visitsExplain things clearly in plain languageFocus on key messages and repeatUse a “teach back” or “show me” technique to check for understandingUse patient-friendly educational materials to enhance interaction

Strategies: Use Plain Language: ExamplesStops SwellingNot CancerBirth ControlHigh BPBy MouthPicture of the heartAnti-inflammatoryBenign Contraception Hypertension Oral Echocardiogram

Plain Language: It’s not just medical terms!We are disseminating information about….We are giving outinformation about…How do you administer the medication?How do you givethe medicine?Have you ever purchased generic medications?Do you ever buystore brand medicine?This product has an extensive list of symptoms that it treats…Thismedicinecan help with many thingslike fever, or pain, etc….

Strategies: Use Patients’ Social HistoryHow far did you go in school?Did you ever have any difficulty in school? Has reading ever been a problem for you?Other possible ways to ask:Have you ever had difficulty reading materials the doctor gave you?Has a doctor ever been unclear when they explained things to you?

D.I.R.E.C.T.D- Do you have any Difficulty readingI- Are you interested in ImprovingR-We have Referrals/resources availableE- Ask EveryoneC- This is a Common problemT- Take down the barriers to obtaining the resources and take down current barriers to providing effective careSource: Balydon, Glusman, and Sharkey-Asner, 2009For Reach Out and Read Illinois

Strategies: Written materialsSimple words (1-2 syllables)Short sentences (4-6 words)Short paragraphs (2-3 sentences)No medical jargonHeadings and bulletsLots of white space

Strategies: Teach BackAsk patient to demonstrate understanding“What will you tell your spouse about your child’s condition?”“I want to be sure I explained everything clearly, so can you please explain it back to me so I can be sure I did.”Academic settings can use the resident or student/attending interaction to do thisDo not ask, “Do you understand?”

Strategies: Use VisualsShow or draw simple picturesFocus only on key pointsEmphasize what the patient should do Minimize information about anatomy and physiologyBe sensitive to cultural preferencesVisual aids can include handouts, pictures, models etc.

System ChangeIdentify patientsIdentify the barriers faced by both patients and cliniciansIdentify and implement strategies to enhance health literacyAdvocate for system change

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