Reading Between the Lines: deciphering the connections between literacy and health

1
Reading Between the Lines deciphering the
connections between literacy and health

• Carmen E. Guerra, MD, FACP
• Assistant Professor of Medicine
• Division of General Internal Medicine
• University of Pennsylvania School of Medicine

2
Overview

• Definitions
• Scope of the problem and who is particularly
  vulnerable
• How to assess literacy
• Patients perspective
• Consequences of low literacy
• Summary

3
Definitions

• Literacy the ability to read, write and speak
• Functional literacy the ability to use reading,
  writing and computational skills to meet the
  needs of everyday life situations, function on
  the job and in society, achieve ones goals and
  develop knowledge and potential
• Varies by context and setting

4
Definitions

• Functional health literacy
• The ability to read, understand and act on health
  information, including information on
  prescription labels and appointment slips,
  complete health insurance forms, follow
  instructions for diagnostic tests and understand
  other essential information required to
  adequately function as a patient (AMA, 1999)
• May be significantly worse than a patients
  general literacy

5
Literacy? Education

• The number of years of school completed measures
  the education attempted, not education attained
• The number of years of school completed does not
  measure what individuals can do with the
  education or the ability to apply it to their
  daily lives
• Education overestimates literacy level

6
Literacy in the United States

• National Adult Literacy Survey
• Conducted by National Center for Education
  Statistics in 1992 to assess functional literacy
• Mean reading levels of adults in the U.S. was the
  8th grade for Medicaid enrollees it was the 5th
  grade
• 40-44 million Americans are functionally
  illiterate
• 50 million Americans had marginal literacy skills
• ½ the U.S. population has inadequate reading
  skills

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Which Americans scored the lowest reading levels?

• African Americans
• Older than 65
• Foreign born
• Living in poverty
• Health problems
• Imprisoned
• Fewer years of education

8
Measuring Literacy

• Word recognition tests
• Wide Range Achievement Test-Revised (WRAT-R)
  Rapid Estimate of Adult Literacy in Medicine
  (REALM) Medical Terminology Achievement Test
  (MART) Slosson Oral Reading Test-Revised
  (SORT-R)
• Reading comprehension tests
• Peabody Individual Achievement Test-Revised
  (PIAT-R) Instrument for the Diagnosis of Reading
  (IDL)
• Functional health literacy tests
• Test of Functional Health Literacy in Adults
  (TOFHLA and STOHFLA)

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Rapid Estimate of Adult Literacy in Medicine
(REALM)

• A word recognition test
• 66 words in three columns
• Read aloud and score for pronounciation
• Score 0 if word mispronounced or not attempted 1
  if correctly pronounced
• No time limit, most patients with adequate
  literacy complete in 2-3 minutes
• Raw score of 0-66 then converted to reading level
  (lt3rd, 4-6, 7-8, gt9th grades)
• Not validated in Spanish-speaking populations

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REALM

• fat fatigue allergic
• flu pelvic menstrual
• pill jaundice testicle
• dose infection colitis
• eye exercise emergency
• stress behavior medication
• smear prescription occupation

11
Test of Functional Health Literacy in Adults
(TOFHLA and STOFHLA)

• Functional health literacy tests, thus measures
  ability to comprehend and apply information in a
  health care setting
• Reading comprehension and numeracy components
• Score 0 for incorrect responses 1 for correct
  responses
• Raw score converted to Inadequate, marginal and
  adequate health literacy categories
• Validated for use in English and Spanish
  populations

12
TOFHLA

• Reading comprehension section uses modified Cloze
  procedure
• Passages from
• - preparation instructions for an upper GI
  series
• -Rights and Responsibilities section of a
  Medicaid application
• -Readability levels are grades 4.3 and 10.4,
  respectively
• Numeracy section consists of items from actual
  hospital forms, labeled prescription bottles,
  instructions for blood glucose levels, clinic
  appointments.

13
TOFHLA

• Your doctor has sent you for 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

14
Prevalence of inadequate functional health
literacy

• 2659 indigent and minority patients at two urban
  public hospitals in Atlanta and Los Angeles
• TOFHLA
• Inadequate literacy in
• 35 of English-speaking participants in Atlanta
• 42 of Spanish-speaking participants in LA
• 13 of English-speaking participants in LA

15
Prevalence of inadequate functional health
literacy

• 3260 Medicare, mostly Caucasian enrollees aged 65
  or older at four locations served by Prudential
  HealthCare plans (Cleveland, Houston, South
  Florida, Tampa)
• STOFHLA
• Inadequate functional health literacy in
• 24 of English-speaking participants
• 34 of Spanish-speaking participants
• Marginal functional health literacy in
• 10 of English speakers
• 20 of Spanish-speakers

16
Health care experiences of patients with
inadequate functional health literacy

• Qualitative study of 60 patients with poor to
  marginal scores on REALM
• Six barriers navigation, completing forms,
  medication instructions, communication with
  providers, interpretation of appointment slips,
  coping strategies to negative treatment by health
  care workers
• Sense of shame was the dominant prevailing theme

17
Navigation

• Problems with locating a clinic or hospital or
  departments within hospitals because unable to
  read signs, including street signs
• I wouldnt a knowed how to get here cause of my
  reading. And I probably wind up in Orange County
  somewhere. Yes, because I did, you know, that
  did happen to me one night.Thats why I brought
  him along points to a friend.

18
Navigation

• I had to go in the basement to get some pads, I
  passed by that place a hundred times and I guess
  that man just got tired of me walking around down
  here, and he told me let me see your paper,
  baby let me see if I can help you, cause I had
  been down there so long.

19
Completing forms

• A barrier to applying for medical care,
  understanding consent forms and educational
  literature
• Ive had a lot of illnesses, but I preferred to
  stay home, until I get better by taking anything
  I can. Because being asked to fill this out, to
  fill that out, I feel embarrassed to ask for
  help, to ask them to fill them out for me. They
  might get upset or they would say, This lazy
  lady, she never learned to read, thats how I
  think

20
Medication instructions

• Many difficulties with reading prescriptions,
  resulting in medication errors such as taking a
  pill every three hours rather than TID.
• They was supposed to be giving me some pain
  pills, some Motrin, and the prescription was
  wrote out wrong, and I was taking high blood
  pressure pills. And I went into a reaction.I
  started feeling stuff crawling on me and stuff,
  you know, messing with my nerves. And thats
  when I asked my sister what was it. She said,
  Dog, you cant read!All of them figured I
  could read.

21
Communication with providers

• Most complain provider does not listen or explain
  medical problem or treatment in a way they can
  understand
• Easily intimidated and less likely to ask
  questions or to admit they do not understand
  instructions
• Few have told their provider about their reading
  difficulties because of shame or because they
  dont believe their physician is interested in
  knowing

22
Appointment slips

• Dates in numbers are more easily understood than
  prose
• Many patients rely on health care workers to tell
  them the date, and the appointment slip then
  serves as a reminder, often read by family
  members
• I told one of my sons, Tell me again, when do I
  have an appointment? And he told me, You
  already missed it. I need to be asking them to
  tell me when I have the appointment, and then I
  wont forget.

23
Coping strategies

• Some ask for help, but many are ashamed to
• Some use family or friends as surrogate readers
  and/or to accompany them to appointments, but
  many others have not told family members about
  their poor reading skills
• Most rely on oral explanations or demonstrations
• Non-adherence or poor adherence often a
  consequence

24
Shame

• All these problems, not knowing how to read, it
  feels like being blind, ignorant, I feel
  embarrassed to tell the doctor I cannot
  understand. I feel really bad, that I am not
  worth anything, that there is no reason for me to
  be in this world, that I came into this world
  only to suffer.

25
Health care experiences of patients with
inadequate functional health literacy

• Our healthcare places significant reading demands
  on patients
• Providers work under the assumption that patients
  can read adequately
• Ask patients about literacy
• A lot of our patients have trouble reading
  prescription bottles and other things like that.
  Is this a problem for you?
• Is there anyone who helps you to read your
  medicine bottles or other things we give you?