Health Literacy: From Patient Care to Policy

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Health LiteracyFrom Patient Care to Policy

• David W. Baker, MD, MPH
• Chief, Division of General Internal Medicine
• Feinberg School of Medicine,
• Northwestern University
• Chicago, Illinois

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National Adult Literacy Study

• Can people do everyday reading tasks necessary to
  function in society?
• Measured ability to read and comprehend everyday
  tasks
• Reading newspaper (prose)
• Completing forms (document literacy)
• Balancing a checkbook (quantitative)

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Functional Literacy

• An individuals ability to read, write, and
  speak in English, and compute and solve problems
  at levels of proficiency necessary to function on
  the job and in society, to achieve ones goals,
  and develop ones knowledge and potential.
• National Literacy Act of 1991

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40 Million Americans Have Limited Reading Ability

Kirshner et al. National Adult Literacy Study.
1993.
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Prose Literacy - NALS
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Document Literacy - NALS
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Quantitative Literacy - NALS
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Can Patients Read and Understand the Materials We
Expect Them to Read?
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Recommended Treatments After a Myocardial Infarct

• Aspirin
• Beta blocker
• ACE inhibitor
• Warfarin?
• Low fat/cholesterol diet
• Cholesterol-lowering drug
• Exercise program
• Tx for hypertension, diabetes

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Our Expectations of Patients Continually Increase

• Self-assessment of health status
• glucometer
• peak flow meter
• bp monitoring
• Self-Treatment
• Insulin, steroids, diuretics
• Health care utilization
• Insurance coverage
• ER, Specialists

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Test of Functional Health Literacy in Adults
(TOFHLA)

• Pill bottles
• Appointment slips
• Informed consents
• Discharge instructions
• Health education materials
• Insurance applications

Medication Take as directed
Dr. Baker
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Prescription Label If you were going to eat
lunch at noon, what time should you take the
medicine before lunch?
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Appointment Slip (Document) When is your next
appointment? Where?
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Quantitative Skills (Numeracy) Is your blood
sugar normal today?
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Reading Comprehension Medicaid Rights and
Responsibilities (10th grade level)
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Many Patients Could Not Perform Basic Reading
Tasks
Incorrect 

• Taking Medication on an empty stomach
• When is your next appointment?
• Interpret blood sugar
• Medicaid Rights and Responsibilities Form

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• 34

Williams et al, JAMA 1995
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TOFHLA CategoriesTest Of Functional Health
Literacy in Adults

• LOW or INADEQUATE (lt 60)
• Often misread dosing instructions and appointment
  slips.
• MARGINAL (60-74)
• Struggle with prescription instructions.
• ADEQUATE (gt 75)
• Handle most health care tasks.
• Struggle with informed consents.

LOW
LITERATE
MARGINALLY
LITERATE
LITERATE
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One Third of Patients Had Inadequate Functional
Health Literacy
Williams et al. JAMA 95.
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Low Literacy by Years of School Completed

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Inadequate Literacy More Prevalent Among Blacks,
Hispanics

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Inadequate Health Literacy Increases with Age
84
73
51
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Age and LiteracyNational Adult Literacy Study
Kirsch et al. NALS 93
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Conclusions from the Literacy in Health Care Study

• Many patients cannot perform the basic reading
  tasks encountered in health care.
• Problem greatest among those with greatest need
• Minorities
• The elderly
• People in poor health
• Years of school completed is an inaccurate
  indicator of educational attainment.

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Health Literacy Among the Elderly(The Prudential
Study)

• 3260 new SeniorCare enrollees in 4 areas
  Cleveland, Houston, Tampa, and S. Florida
• Interviewed by telephone to determine eligibility
  and willingness to participate
• Home interview demographics, chronic diseases,
  health status, social support, mini-mental status
  examination
• Literacy testing Short TOFHLA

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One Third Of Medicare Managed Care Enrollees Had
Low Literacy

Gazmararian et al. JAMA 99.
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Inadequate Literacy Varied by Study Site

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Prevalence of Low Literacy Increased with Age

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Literacy Declines with Age, Regardless of
Education
DW Baker. J Gerontol B Psychol Sci Soc Sci 2000
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Effects of Literacy on Health Care and Health
Outcomes
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Low Literate PatientsLess Likely to Know
Diagnosis
Know Diagnosis
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Low Literate Diabetic Patients Have Less
Knowledge of Their Illness
Know normal sugar is 70 - 140
Know uncontrolled diabetes damages kidneys /
nerves
Percent
Williams, et al. Arch Int Med 98
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Low Literate Diabetic Patients Less Likely to
Know Correct Management
Know symptoms of low blood sugar (hypoglycemia)
Know correct action for hypoglycemic symptoms
Percent
Williams, et al. Arch Int Med 98
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Patients with Hypertension Less Likely to Know
Correct Health Behaviors
Know exercise blood pressure
Know weight loss blood pressure
Percent
Williams, et al. Arch Int Med 98
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Low Literate Asthma PatientsHave Worse MDI Skills
p lt 0.001 across groups
Mean MDI Score 0 - 4
Williams, et al. Chest 98
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Inadequate Literacy Affects Use of Preventive
Services
T Scott. Med Care 02
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Patients with Inadequate Literacy More Likely to
be Hospitalized
p lt .001 for comparison of one or more admissions
p lt .001 for comparison of two or more admissions
Baker et al. JGIM 98
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Inadequate Literacy Associated with 52 Higher
Risk of Admission
Adjusted for age, gender, socioeconomic status,
health status, and regular source of care.
Baker et al. JGIM 98
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Medicare Patients with Low Literacy More Likely
to be Hospitalized
DW Baker. AJPH 2002
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Inadequate Literacy Associated with 29 Higher
Risk of Admission
Adjusted for age, gender, socioeconomic
status,health status, chronic diseases, health
behaviors.
DW Baker. AJPH 2002
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Rates of Outpatient MD Visits Similar Regardless
of Literacy
DW Baker. JGIM 2001 (abs)
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Time to First MD Visit Similar
With No Visit
Adequate (n2094)
Inadequate (n800)
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Patients with Diabetes and Inadequate Literacy
More Likely to Have Poor Glycemic Control
D Schillinger. JAMA 2002
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Low Literacy Associated With Higher Rates of
Diabetic Complications

• Adjusted OR
• Retinopathy 2.33 (1.19 4.57)
• Nephropathy 1.71 (0.75 3.90)
• Amputation 2.48 (0.74 8.34)
• Cerebrovascular Dz 2.71 (1.06 6.97)
• Ischemic HD 1.73 (0.83 3.60)

D Schillinger. JAMA 2002
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What We Know

• Low health literacy is associated with
• Less knowledge of disease and self-care,
• Worse self-management skills,
• Lower medication compliance rates,
• Higher hospitalization rates,
• Worse health outcomes.
• Low health literacy not associated with
• Lower use of outpatient services,
• Higher rates of depression.

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What We Still Dont KnowTo What Degree is
Literacy the Problem?

• Does low literacy cause worse outcomes?
• Inability to read and comprehend health
  information directly affects quality of care and
  self-management.
• Is low literacy a marker for other true (but
  unobserved), causal variables such as
• Low self-efficacy/external locus of control,
• Community norms that do not promote favorable
  health behaviors.

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Why Care About Mechanisms?Because Informs
Interventions

• If low literacy (poor reading comprehension)
  causes worse outcomes, simplifying written
  materials or presenting material with alternative
  media will eliminate the problem.
• If low literacy is a marker for other risk
  factors, just simplifying written materials may
  have little or no ameliorative effect.

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Theory of Reasoned Action/Planned Behavior
Beliefs that behavior leads to outcome
Attitude Toward Behavior
Evaluations of behavioral outcomes
Beliefs that people think behavior is good or bad
Behavioral Intention
Subjective Norm
Behavior
Motivation to comply with these people
Beliefs about ability to enact the behavior
Perceived Behavioral Control
Anticipated resources and/or obstacles
Glanz, Lewis, Rimer 1997
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Theory of Reasoned Action/Planned Behavior
Behavioral Beliefs
Attitude Toward Behavior
Evaluations of Behavioral Outcomes
Low Literacy
Normative Beliefs
Behavioral Intention
Subjective Norm
Behavior
Motivation to Comply
Control Beliefs
Perceived Behavioral Control
Perceived Power
Glanz, Lewis, Rimer 1997
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Addressing the Problem
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At The Bedside Identifying Low Literate Patients

• High risk group did not complete high school,
  minority, elderly.
• Does not know names of medicines
• Frequent missed appointments
• I forgot my glasses
• Always comes with someone else
• surrogate reader

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Bringing Up the Topic

• How far did you go in school?
• A lot of people have trouble reading things they
  get from the doctor because of all the medical
  words. Is it hard for you to read the things you
  get here at the hospital?
• Ask patient to read prescription bottle.

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What to Do After You Open Pandoras Box

• Be supportive
• Use support system!
• Be creative
• Tape pills to card
• Markers on insulin syringes
• Phone reminders
• Repeat Back, check comprehension.

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The main problem with communication is the
assumption that it has occurred.George Bernard
Shaw
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For Health Care SystemsUse of Plain Language

• Assess reading level of existing health
  information.
• Re-write at simplest level possible (usually
  about 6th grade level).
• Add pictographs to communicate essential points.

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Assess Reading Level of Existing Health
Information
If you have a lung disease, such as chronic
obstructive pulmonary disease (COPD) or asthma,
there are many lung function tests a doctor can
do in his or her office or in a lab. Lung
function tests, such as measuring peak
inspiratory flow rates (PIFR) and peak expiratory
flow rates (PEFR), allow the doctor to measure
how much air you can take into your lungs with a
deep breath (inhale) and how quickly you can
expel the air from your lungs (exhale). Lung
function tests assist the doctor in diagnosing
breathing problems and in monitoring how well
your lungs are working. Flesch-Kincaid reading
level 12th
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Easy to Simplify Health Information to 6th Grade
Level
If you have a lung disease, such as chronic
bronchitis, emphysema, or asthma, your doctor may
recommend tests to see how your lungs are
working. These tests measure how fast you can
breath air in and breath air out. These tests
help your doctor understand what is wrong with
your lungs. Sometimes, your doctor will repeat
the test to follow how well your lungs are
working. Flesch-Kincaid reading level 6.5
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Simplified Polio Vaccine Brochure Improves
Comprehension
TC Davis. Pediatrics 96
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Pictographs Improve Comprehension
P Houts. Pt Ed Counsel 98
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Pictographs Improve Knowledge and Compliance w/
Wound Care Instructions

• w/o Cartoons w/ Cartoons
• Did not read instructions 20
  2
• Very satisfied w/ instructions 66
  97
• Wound care questions correct
• 0-1 33 3
• 2-3 61 51
• All 4 6 44
• Compliance w/ daily wound care 54 77

C Delp, J Jones. Acad Emerg Med, 1996
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Screening for Low Literacy Prior to Patient
Education

• Diabetes
• Hypertension
• Asthma
• Heart failure
• Anticoagulation clinic
• 2 Screening tests available
• REALM
• Short TOFHLA

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Does Low Literacy Affect Patient Safety?
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WASHINGTON (AP) -- Toni Cordell-Seiple uses
different-colored markers to carefully write
"from lung doctor" or "for blood pressure" on her
husband's myriad prescription bottles. It's
easier than stopping to decipher the 10-letter,
almost unpronounceable drug names each time she
grabs one of the lookalike bottles. It's also
something of a reflexive defense for the Georgia
woman, who says she once read so poorly that she
signed hospital forms unknowingly consenting to a
hysterectomy.
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Does Inadequate Literacy Lead to Excess Medicare
Hospital Costs?

• 36 Million Medicare Eligible

44 Functionally Illiterate (16 million)
2262 per Person / Year
25 - 50 Higher Hospital Costs
Excess Hospital Costs 8 - 15 BILLION
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Future Research

• Does reading comprehension really decline with
  age? Can we prevent this?
• How does low literacy affect patient safety?
• To what degree does low literacy explain
• Low socioeconomic status worse health?
• Racial and ethnic disparities?
• Does computer-aided education improve
  comprehension, retention, and behaviors?
• How can we improve communication w/ all pts?