The importance of health literacy hit home for Lisa
Gualtieri when a Cambodian refugee diagnosed with cancer asked her to act as a
She played the role of a "salty tongue," a
Cambodian expression that paints outspokenness in a positive light. But even
though the patient's family was in the room when doctors took the time to
answer every last question about test results and treatment options, the
refugee's family would call Gualtieri hours later to review what doctors had
A new study, published in JAMA Internal Medicine,
suggests one potential reason for the family's confusion: Despite good
intentions, many experts may be creating educational materials that are too
difficult for patients and their families to grasp.
Patients always quote
"Patients will often come to the office, and one of the
first things they say to you, especially about technical information, they'll
say that they've been on the Internet, and they'll quote one or two key phrases
back to you," said study author Dr Charles Prestigiacomo.
"Unfortunately, the little soundbites, while accurate, may not be
"Prestigiacomo and his colleagues at the University of
Medicine and Dentistry of New Jersey (UMDNJ) in Newark used a number of
readability scales - including "simple measure of gobbledygook (SMOG)
grading" - to test how challenging materials by 16 different medical
specialty societies were to read. The average reading level of the online
materials by groups ranging from the American Society of Anesthesiologists to
the American Psychiatric Association, fell anywhere from ninth grade to the
sophomore year of college.
That's far above the fourth-to-sixth grade level recommended
by the American Medical Association and by a number of US government agencies
such as the Department of Health and Human Services. Those guidelines are based
on the fact that the average American writes at 7th or 8th grade level, said
Nitin Agarwal, a medical student at UMDNJ and another author of the
study."We might not be cognizant of the population reading our articles,
who might need something more simple," Agarwal told Reuters Health.
Study looked at the
The current study's findings agree with those of previous
work by some of the same researchers looking at patient education materials in
individual specialties."Organisations often end up using jargon,"
said Gualtieri, who studies health communication at Tufts University in
Medford, Massachusetts, but was not involved in the new research. They end up
"using the language they're accustomed to as opposed to (the language) the
people they're trying to reach are accustomed to using," she told Reuters
Health."You have to think about reaching people where they are," she
Sometimes, according to Prestigiacomo, that means using
analogies. "There are only so many ways you can describe an
aneurysm," said the UMDNJ neurosurgeon, who tells patients such ballooning
blood vessels are "like a blister on a tire.""The problem is
that it's not quite perfectly accurate," he said. "But sometimes we
have to realise that simplifying it to an analogy may be the best way for
patients to understand it."
Drowning in cliches
When it came to the quality of the writing, obstetrics and
gynecology really failed to deliver. Materials in that specialty had nearly six
cliches for every 50 pages, and also "contained the highest total number
of indefinite article mismatches (the improper use of "a" or
"an").""You go from region to region in the US, people
aren't familiar with what each cliche refers to," said Agarwal.
And in a sentence that might have unintentionally
demonstrated the authors' point, they report, "The proportion of passive
voice sentences used throughout resources ranged from 4% in family medicine to
27% in neurological surgery." "Concise and to the point is the way to
go for this sort of stuff," Agarwal said.
Gualtieri recommended that those who produce such materials
consider why people are coming to their sites, and what they're looking for.
She echoed the authors' suggestion that such sites use pictures and
videos."The organisations represented should be happy that people are at
their sites," Gualtieri said. "It's high-quality, reliable
information, there's a lot out there that isn't.
If one of these organisations could read something like
this, and say, 'we're not doing everything we can for those who most read us,'
that would be a lovely outcome from a study like this."That's already
Prestigiacomo showed the results to one of the specialty
groups whose patient materials were analysed before publishing the paper, and
the organisation committed to rewriting them. And the Cambodian man with cancer
is doing well, Gualtieri said. "The treatment was successful."