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
Overview
• Definitions
• Scope of the problem and who is
particularly vulnerable
• How to assess literacy
• Patient’s perspective
• Consequences of low literacy
• Summary
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 one’s goals and
develop knowledge and potential
– Varies by context and setting
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 patient’s
general literacy
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
Literacy in the United States
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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
Which Americans scored the
lowest reading levels?
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African Americans
Older than 65
Foreign born
Living in poverty
Health problems
Imprisoned
Fewer years of education
Measuring Literacy
• Word recognition tests:
Wide Range Achievement Test-Revised (WRATR) Rapid Estimate of Adult Literacy in Medicine
(REALM)* Medical Terminology Achievement
Test (MART) Slosson Oral Reading TestRevised (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)*
Rapid Estimate of Adult Literacy
in Medicine (REALM)
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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 (<3rd, 4-6, 7-8, >9th grades)
• Not validated in Spanish-speaking
populations
REALM
fat
flu
pill
dose
eye
stress
smear
fatigue
pelvic
jaundice
infection
exercise
behavior
prescription
allergic
menstrual
testicle
colitis
emergency
medication
occupation
Test of Functional Health Literacy in
Adults (TOFHLA and STOFHLA)
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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
TOFHLA
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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.
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
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
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
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
Navigation
Problems with locating a clinic or
hospital or departments within
hospitals because unable to read signs,
including street signs
“I wouldn’t 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….That’s why I
brought him along [points to a friend].”
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.”
Completing forms
A barrier to applying for medical care,
understanding consent forms and
educational literature
“I’ve 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,’ that’s how I
think”
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 that’s when I asked my sister
what was it. She said, ‘Dog, you can’t
read!’…All of them figured I could read.”
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 don’t believe their
physician is interested in knowing
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 won’t
forget.”
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
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.”
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?”