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An Updated Overview of Medical and Public Health Literature Addressing Literacy Issues: An Annotated Bibliography of Articles Published in 2001
by Emily Zobel, BA
March, 2002
Executive Summary
Introduction
Annotations
Citation: Zobel E. An updated overview of medical and public health literature
addressing literacy issues: an annotated bibliography of articles published in
2001. Harvard School of Public Health: Health Literacy Website. 2002. Available
at http://www.hsph.harvard.edu/ healthliteracy/ literature/ lit_2001.html.
Accessed "insert date."
The National Center for the Study of
Adult Learning and Literacy
Addressing Literacy Issues:
An Annotated Bibliography for 2001
Executive Summary
In January 2000, Rudd et al. published an annotated
bibliography of medical and public health literature addressing literacy issues
published between 1990 and 1999. Their search of the literature indicated a
growing recognition of literacy issues and communication barriers within the
health fields. Jennifer Greenberg, ScM then published an updated bibliography,
which included annotated literature from the year 2000. This bibliography serves
to augment the initial two searches with more recent literature from 2001.
As the body of literature addressing literacy and health
continues to grow, the definition of health literacy has begun to expand
throughout the medical and public health arena. This annotated bibliography,
like its predecessors, includes many articles that relate to written health
education materials assessments and their connection with poor health outcomes.
But, this report also presents a new body of literature that begins to review
the role of the Internet in health education and health literacy. Another new
facet of the 2001 bibliography is that there are several editorial pieces which
bring to light many opinions of practitioners in the field. This growing trend
in the literature is unique in that it is a vehicle for practitioners to voice
their own insights from experience.
This bibliography includes 29 citations which are arranged
in the following categorical groups:
Introduction
The literature search followed the search guidelines set
forth in the original annotated bibliography, published by NCSALL in January,
2000. The Med-Line database was searched for articles addressing literacy issues
in health care and in health promotion/education between January 1, 2001 and
December 31, 2001.
The following keywords were used to identify literature
that addresses literacy issues: literacy, illiteracy, illiterate, readability,
educational status, and communication barriers. As in the original search, the
last two terms, educational status and communication barriers were included in
order to find articles related to, but not directly mentioning, literacy. The
search was limited to articles published in the English language.
The initial yield of items was
restricted to a set, including only articles concerned with patients, health
education, and materials. The following keywords were used to generate a
cross-listing of articles: patient, health
education, materials, health services, and health. This search was also limited
to articles published in the English language since January 2001. The two search
yields were cross-referenced.
Based on an initial review of the abstracts, we eliminated
unrelated articles, such as those focused on provider education or those only
addressing education as a control variable. Most of the studies conducted in
developing countries were eliminated while studies from other English-speaking
countries, such as Australia and Canada, were included. Twenty-nine articles are annotated for this update of the health
literacy bibliography.
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The annotations are divided into four categories. They
include: Literacy Levels of
Patients, Clients or Program Participants; Editorials/Letter
to the Editor; Materials Assessment;
and Health Promotion.
Literacy Levels of Patients, Clients or Program Participants
Fortenberry J.D., McFarlane M.M., Hennessy M., Bull S.S.,
Grimley D.M., Lawrence J.St., Stoner B.P., VanDevanter N. (2001). Relation of
health literacy to gonorrhea related care. Sexually
Transmitted Infections, 77(3): 206-11.
Assesses the relationship between health literacy and
participation in a screening test for gonorrhea
over a one-year period. The Rapid Estimate of Adult Literacy in Medicine (REALM)
was used to assess the patients' reading levels. Patients were all participants
of the Gonorrhea Community Action Project (GCAP) which was a multisite program
including clinics from MD, CO, CA, IN, MO, NY and AL. Researchers report that
scoring a level of 9th grade or higher is associated with a 10%
increase in the probability of having a gonorrhea test in the past year.
Arnold C.L., Davis T.C., Berkel H.J., Jackson R.H., Nandy
I., London S. (2001). Smoking Status, Reading Level, and Knowledge of Tobacco
Effects among Low-Income Pregnant Women. Preventive
Medicine, 32(4): 313-20.
Assesses the reading level, tobacco knowledge, attitudes,
and practices among pregnant adult and adolescent women in the public health
system in north Louisiana. Reading levels were assessed by the REALM. Findings
indicate that those scoring higher on the REALM have more knowledge about the
ill effects of smoking; however, smoking was more prevalent among this group.
Kaufman H., Skipper B., Small L., Terry
T., McGrew M. (2001). Effect of Literacy on Breast-feeding Outcomes. Southern
Medical Journal, 94(3): 293-296.
Examines the effect of
functional health literacy on the initiation and continuance of breast-feeding
among low-income women being served by a public health clinic in New Mexico.
Researchers used the REALM to compare the literacy skills of first time mothers
who never breast-fed with those who exclusively breast-fed for at least the
first two months. Findings indicate a strong association between a mother's
literacy level, as assessed by the REALM, and the likelihood of initiating and
sustaining breast-feeding during the first 2 months of life.
Montalto N.J., Spiegler G.E. (2001). Functional health
literacy in adults in a rural community health center. The West Virginia Medical Journal, 97(2): 111-4.
Examines whether health
care providers in a rural, primary care community health center routinely
identify patients with comprehension/computation problems to assess the
prevalence of patients with literacy/numeracy deficits. Researchers administered
the TOFHLA to all 70 study participants then cross-referenced the results with
clinical charts to see if the provider had indicated any literacy deficit.
Findings indicate that approximately 15% of the patients demonstrated literacy/numeracy
deficits and no notation was made in his/her medical chart.
Raich P.C., Plomer K.D., Coyne C.A. (2001). Literacy,
Comprehension, and Informed Consent in Clinical Research. Cancer Investigation, 19(4): 437-445.
Assesses the readability of informed consent documents
through application of the Fry Readability Scale. Researchers found that 66% of
the forms were at a level considered to be "scientific/technical".
Researchers recommend that IRB's need to pay closer attention to patients'
average reading levels when approving forms for distribution.
Davis T.C., Dolan Nancy C., Ferreira M.R., Tomori C., Green
K.W., Sipler A.M., Bennett C.L. (2001). The Role of Inadequate Health Literacy
Skills in Colorectal Cancer Screening. Cancer
Investigation, 19(2): 193-200.
Examines the association between inadequate health literacy
skills and low rates of colorectal cancer screening. Researchers facilitated
focus groups of people with low health literacy skills. Findings indicate a
strong correlation between health literacy skills and cancer screening
practices. Researchers suggest that new methods of health education need to be
developed and that physicians need to be taught specific skills in communicating
screening information to reach low literate adults.
Editorials/Letters to the Editor No authors listed (2001). Higher risk of re-admits when
patient can't read. Hospital Case Management, 9(2): 27-8.
Emphasizes the importance of health literacy in patient
education and focuses on two major points of interest: variety in materials and
assessment of the target audience.
Mason D.J. (2001). Promoting Health Literacy. American
Journal of Nursing, 101(2): 7.
Urges nurses to take action to improve health literacy. The
editorial refers to a study done in Brooklyn, NY [Joseph M., Freda M.C. (2001).
The Impact of Staff Nurses on the Recruitment of Patients. American Journal of Nursing, 101(2): 26-32.] which documents how primary care nurses at a major medical center contribute to
the health of families through assessment, outreach, and patient education.
Kickbusch I., Ratzan S.C. (2001). Health literacy: making a
difference in the USA. Journal of Health
Communication, 6(2): 87-8.
The authors describe the benefits of
a collaborative effort to promote health literacy. The Department of
Health and Human Services and the Department of Education joined with the
private and the voluntary sector to help promote health literacy by influencing
various health literacy policies in Medicare and Medicaid.
Weir E. (2001). Illiteracy as a Public Health Issue. Canadian
Medical Association Journal, 164(10): 1486.
Links the issues of health literacy and low self-esteem.
The article stresses that providers pay close attention to the literacy levels
of their patients and to sensitively address these issues without embarrassing
their patients.
Kalichman S.C., Benotsch E., Weinhardt L. (2001). Quality
of health information on the Internet. Journal
of the American Medical Association, 286(17): 2092-3.
(Refers to: Berland et al (2001). Health Information on the
Internet: Accessibility, Quality, and Readability in English and Spanish. Journal
of the American Medical Association, 285(20): 2612-2621 annotated later in
this report)
The author concurs with the Berland et al article
recommendation for reducing the reading level of on-line health information. The
author cites one study indicating that AIDS patients with low literacy skills
who access the Internet may be poorly informed. People who lack basic health
literacy skills may not be able to acquire factual knowledge of their disease
and may actually be misinformed.
Leaffer T.R. (2001). Quality of health information on the
Internet. Journal of the American Medical
Association, 286(17): 2094-5.
(Refers to: Berland et al (2001). Health Information on the
Internet: Accessibility, Quality, and Readability in English and Spanish. Journal
of the American Medical Association, 285(20): 2612-2621 annotated later in
this report)
Reports that studies done with senior citizens searching
for health information on the Internet indicated no evidence that high
readability levels were a problem to accessing information. Additionally, if
simpler key-words were used in searches, as suggested in the Berland et al
article, there was an overabundance of irrelevant links which overwhelmed the
seniors. The author also states that conflicting health information on the
Internet should be viewed as confusing. Professional
journals present conflicting studies and health information and these viewpoints
used to be only accessible to physicians and medical researchers, now because of
the Internet, this information is accessible to anyone who seeks it.
Kickbusch I.S. (2001). Health literacy: addressing the
health and education divide. Health
Promotion International, 16(3): 289-97.
The author proposes to develop a set of indicators to
quantify health literacy, using experience gained in national literacy surveys
around the world. The editorial argues that a health literacy index could become
an important composite measure of the outcome of health promotion and prevention
activities. In addition, it could document the health competence and
capabilities of the population of a given country, community or group and relate
it to a set of health, social and economic outcomes.
Riggs J.A. (2001). Health illiteracy. Hazardous to quality
health care. New Jersey Medicine,
98(11): 49-50.
Reports on the AMA Foundation Health Literacy Project. The
article concentrates on the issue of health literacy and how the AMA is hoping
to raise public and physician awareness. The author emphasizes the fact that
low-literacy skills are costing the US health care system anywhere from $30
billion to $73 billion annually in extra doctor visits and increased
hospitalization.
Harmon K.S. (2001). Health Literacy. Wasted Words.
Hospitals & Health Network, 75(11): 30,32.
Stresses the financial imperative to address health
literacy issues in hospital settings. Strategies such as implementing small
health literacy programs within existing hospital programs are suggested. The
author also addresses the issue of reimbursement for health literacy programs.
Materials Assessment Molina L. (2001). Readability of education materials and
informed consent forms for women seeking surgical sterilization. International
Journal of Gynecology & Obstetrics, 73(2): 177-178.
Assesses the readability and comprehension of three
different contraceptive choice pamphlets and one consent form from a New York
hospital. The researchers assessed readability with the SMOG then surveyed women
on their comprehension of the pamphlet materials and consent form. Findings
indicate that women understood the alternative contraceptive choices to
sterilization but that they did not adequately understand the possible side
effects or implications of sterilization. The pamphlets scored, on average, at a
12th grade reading level and the consent form scored at the 14th grade reading
level.
D'Alessandro D.M., Kingsley P., Johnson-West J. (2001). The
Readability of Pediatric Patient Education Materials on the World Wide Web. Archives
of Pediatric and Adolescent Medicine, 155(7): 807-812.
The readability of articles from
General Pediatrics.com was
assessed using the Flesch Reading Ease, Fry and SMOG formulas. Findings indicate
that, on average, materials were written at a 12th grade reading
level and may not be accessible to the average adult, who reads at a 8th
grade or lower level.
Buchbinder R., Hall S., Grant G., Mylvaganam A., Patrick
M.R. (2001). Readability and Content of Supplementary Written Drug Information
for Patients used by Australian Rheumatologists. Medical Journal of Australia, 174(11): 575-8.
Uses the FOG and SMOG Formulas to
assess the readability and content of supplementary written drug information
currently being given to patients by rheumatologists in Australia. Findings
indicate that information written by individuals or hospital departments had the
highest scores, while documents from the Arthritis Foundation of Australia (AFA)
had the lowest scores. The contents, specifically the discussion of side
effects, were described using too much medical jargon.
Berland G., Elliott M.N., Morales L.S.,
Algazy J.I., Kravitz R.L., Broder M.S., Kanouse D.E., Munoz J.A., Puyol J.A.,
Lara M., Watkins K.E., Yang H., McGlynn E.A. (2001). Health Information on the
Internet: Accessibility, Quality, and Readability in English and Spanish. Journal
of the American Medical Association, 285(20): 2612-2621.
Evaluates health information on breast
cancer, depression, obesity, and childhood asthma available through English and
Spanish language search engines and Web sites. The reading grade level of
selected text was assessed using the Fry Readability formula. All English and
86% of Spanish Web sites required high school level or greater reading ability.
The English Web sites ranged from 10th grade to graduate school level with a 13
grade reading level. The Spanish Web sites ranged from grades 7 to 13 with a
10th grade average reading level.
Winslow
E.H. (2001). Patient education
materials. American Journal of Nursing, 101(10): 33-8 quiz 39.
Reviews the current status of literacy
in America and issues of health literacy. The article stresses the importance of
patient education materials with low reading grade levels. The second portion of
the article describes the tools available for assessing patient materials, such
as the Word and WordPerfect tools which assess the reading grade level of
documents. The article also reviews how one can turn medical jargon into
familiar terminology.
Smart J.M., Burling D. (2001).
Radiology and the Internet: a systematic review of patient information
resources. Clinical Radiology, 56(11):
867-70.
The purpose of the study was to
determine whether or not the Internet was a useful resource for patients seeking
information on radiological procedures. A systematic search of the Internet was
performed using four search engines (AltaVista, Yahoo!, Infoseek and Excite).
Twenty-eight patient-directed sites on arteriography were analyzed for content
and readability of the materials was evaluated using the Flesch reading ease
score. The results of the study indicated that the risks involved were consistently absent from most of the Web
sites. Visual aids were only used in 21% of the sites and the mean Flesch
reading ease score was 57, with 46% of the sites below the preferred minimum of
60.
Health Promotion Leger L.St. (2001). Schools, health
literacy and public health: possibilities and challenges. Health Promotion International, 16(2): 197-205.
Discusses the importance of a whole school approach that addresses health and social issues. This is based on the
belief that achieving a level of critical literacy allows for greater autonomy
and personal empowerment that would have great effects on self-management and
public health.
Levin-Zamir D., Peterburg Y. (2001).
Health literacy in health systems: perspectives on patient self-management in
Israel. Health Promotion International,
16(1): 87-94.
Reports that patient education
incorporating self-management and issues of empowerment has been proven to be
cost-effective. The authors describe that improving health literacy is a central
strategy for improving self-management in health. This article highlights three
key concepts in promoting health literacy: 1) developing appropriate tools 2)
training health professionals and 3) developing and applying assessment tools.
Ratzan S.C. (2001). Health literacy:
communication for the public good. Health Promotion International, 16(2): 207-14.
Details four predominant areas within
the communication field that highlight approaches for developing health
literacy: 1) integrated marketing communication 2) education 3) negotiation and
4) social capital. All four approaches have a strong emphasis on the
fundamentals of social marketing.
Lindau S.T., Tomori C., McCarville M.A., Bennett C.L.
(2001). Improving Rates of Cervical Cancer Screening and Pap Smear Follow-Up for
Low-Income Women with Limited Health Literacy. Cancer Investigation, 19(3): 316-323.
Examines the health impact of low literacy among urban
women, specifically in regards to cervical cancer. The study indicated that low
literate patients (identified using the REALM) are more likely to report poor
health and have an increased risk of hospital admission. The authors urge for a
better assessment of patients' literacy levels by providers in the health care
setting.
Ives N.J., Troop M., Water A., Davies S., Higgs C.,
Easterbrook P.J. (2001). Does an HIV clinical trial information booklet improve
patient knowledge and understanding of HIV clinical trials? HIV Medicine, 2(4):
241-9.
Examines the impact of an information booklet on HIV
clinical trials on patients' knowledge and attitudes about HIV clinical trials.
Fifty HIV-1 positive patients who attended the HIV clinic at a London
hospital were randomized to receive either the standard trial information alone
or the standard trial information and a 16-page information booklet explaining
the principles and procedures of HIV clinical trials. A questionnaire was used
to assess patients’ attitudes to clinical trials at baseline and 2-6 months
after randomization. Researchers found that in both groups there was an increase
in knowledge about clinical trials and the increase was not significantly higher
in one group over the other. The researchers' results indicate that though
patients' knowledge and understanding of clinical trials improved, the
recollection of the protocol details remained poor, possibly because of the
material's high readability scores and the patients' low level reading skills.
Renkert S., Nutbeam D. (2001). Opportunities to improve
maternal health literacy through antenatal education: an exploratory study.
Health Promotion International, 16(4):
381-8.
Focuses on antenatal education. A series of focus groups
and interviews were conducted with a range of health care providers, pregnant
women and new mothers in Australia. The results indicate a range of opinions
about the content of antenatal classes. Only new mothers agreed that the classes
should focus more on providing women with skills they can use after their
pregnancy and empowering them to make important decisions in parenthood a
concept termed by the authors as "maternal health literacy."
Woloshin S., Schwartz L.M., Moncur M., Gabriel S., Tosteson
A.N. (2001). Assessing values for health: numeracy matters. Medical
Decision Making, 21(5): 382-90.
Assessed how subjects valued their current state of health
using 3 standard assessment techniques: standard gamble, time trade-off, and
visual analog scale. Subjects were asked to answer a series of questions
assessing their level of numeracy and
to rate their current global health status. Researchers found that low numeracy
interferes with the completion of quantitative tasks, such as standard gamble
and time trade-off. The authors conclude that people with low numeracy may value
their health differently than people with higher levels of numeracy, which may
have important implications for researchers seeking to incorporate patient
values into medical decisions for health policy.
Hochhauser M. (2001). Medical jargon and legalese.
Health Care Food & Nutrition Focus, 18(1): 3-4.
Examines issues concerning the health literacy of patients
and their ability to understand and comply with instructions from their health
care providers, specifically the Patient's Bill of Rights. The author mentions
that the average reading level of a Patient's Bill of Rights posted in hospital
or physicians’ offices is around grade 14 based on the Flesch Reading Ease formula. The author discusses possible ways
to make health information communications more user-friendly. The author lobbies
for the passage of legislation that would promote a model bill of rights and
lists eight strategies for better communication with patients.
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