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:

  • Literacy Levels of Patients, Clients or Program Participants

  • Editorials/Letters to the Editor

  • Materials Assessments

  • Health Promotion


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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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