December 2000

Grant Results

SUMMARY

In 1993 to mid-1995, researchers at Emory University School of Medicine assessed the prevalence of inadequate health literacy among patients presenting for outpatient acute care in two urban public hospitals, one in Atlanta and one in Los Angeles.

They developed a valid and reliable research instrument, the Test of Functional Health Literacy in Adults, and administered it in both Spanish and English versions.

Key Findings

  • More than 35 percent of English-speaking and 61 percent of Spanish-speaking patients were found to have inadequate or marginal functional health literacy.
  • The problem was especially prevalent among the elderly.
  • Patients with inadequate functional health literacy:
    • Were almost twice as likely to report their health as poor than were those with adequate health literacy.
    • Were more likely than literate patients to misunderstand medication instructions and return appointments.
    • Had difficulty navigating to and within the hospital and understanding informed consent.
    • Were likely to feel shame about their inability to read.
  • Language barriers may be as important as reading difficulties for Spanish-speaking patients.
  • Inadequate health literacy has a negative impact on patient management of both diabetes and hypertension.

Funding
The Robert Wood Johnson Foundation (RWJF) supported this project through two grants totaling $879,684.

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THE PROBLEM

The Congressionally sponsored National Adult Literacy Survey, published in 1993, found that 90 million adult Americans function at the two lowest levels of functional literacy. Some 40 million functionally illiterate adults cannot perform the basic reading tasks required to function in society; another 50 million have only marginal literacy skills. There has been little research on the difficulties these adults encounter in gaining access to health care; on the effects of inadequate literacy on their health; or on the impact of functional health illiteracy on the health care system and health costs.

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THE PROJECT

The purposes of this project were to assess the prevalence of inadequate literacy in the public hospital setting; to develop a reliable instrument for measuring functional health literacy; and to evaluate the impact of inadequate literacy on the health care experience of patients. The study covered 2,659 patients presenting for outpatient acute care at two urban public hospitals: 979 patients (92 percent African-American, 59 percent female) at Grady Memorial in Atlanta; and 1,680 patients (913 English-speaking and 767 Spanish-speaking) at Harbor-UCLA Medical Center near Los Angeles. In Los Angeles, Spanish-speaking patients were predominantly female (65 percent). English-speaking patients were 48 percent African-American, 30 percent white, and 21 percent Latino.

Pre-existing tools to measure literacy in the health care setting were found wanting. The Wide Range Achievement Test (WRAT) assigns a reading grade level, but no estimate of health literacy. The Rapid Estimate of Adult Literacy in Medicine (REALM) can be administered in under five minutes and can be used in a clinical setting to identify patients with poor reading ability. However, neither test assesses quantitative literacy — the capacity to read and interpret numbers — an essential component of health literacy.

  • The grantee developed two versions of a new research instrument to test functional health literacy in adults. The Test of Functional Health Literacy in Adults (TOFHLA) uses written materials from the participating hospitals, such as appointment cards, prescription bottles, and Medicaid application forms, and takes up to 22 minutes to administer. The TOFHLA consists of two parts. TOFHLA: Reading Comprehension is a 50-item test that includes questions about instructions for preparation for an upper gastrointestinal series; the patients' rights and responsibilities section of a Medicaid application form; and a standard hospital informed consent form. TOFHLA: Numeracy is a 17-item oral test of directions for taking medicines, monitoring blood glucose, keeping clinic appointments, and obtaining financial assistance. With no pre-existing test of functional health literacy in Spanish, the researchers also developed the TOFHLA-S (Spanish). Both the TOFHLA and the TOFHLA-S provide valid, reliable measures of patient ability to read health-related material.
  • Focus group sessions yielded insight into the problems and coping strategies of patients with inadequate literacy. Almost 40 percent of such patients who acknowledge their inadequate literacy admit feeling shame. Shame causes patients to hide their reading problem, and some to shun health care. Coping strategies include use of surrogate readers; seeking demonstration of required tasks; and relying on highly developed memories.

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KEY FINDINGS

  • More than 35 percent of English-speaking and 61 percent of Spanish-speaking patients had inadequate or marginal functional health literacy. Confirming the National Adult Literacy Survey findings in the health care setting, inadequate health literacy was strikingly prevalent among the elderly: as many as 81 percent of English-speaking patients in Atlanta, and 83 percent of Spanish-speaking patients in Los Angeles over age 60 performed poorly on the TOFHLA or the TOFHLA-S.
  • For Spanish-speaking patients, language barriers may be as important as reading difficulties. Patients who said an interpreter should have been called rated their understanding of their disease as good to excellent 38 percent of the time, compared to 57 percent of those who were provided with an interpreter.
  • A high proportion of patients could not read and understand basic medical directions containing numerical information. From 8 to 16 percent of patients were unable to read a pill bottle and describe how to take a medication four times a day. As many as 50 percent did not understand how many times a prescription could be refilled. After examining a standard appointment slip, up to 33 percent of patients could not describe when a follow-up appointment was scheduled; as many as 50 percent could not determine whether they were eligible for financial assistance based on their income and number of children.
  • Patients with low functional health literacy were close to two times as likely to report their health as poor than were patients with adequate literacy. At one study site, patients with low health literacy were 50 percent more likely than those with adequate health literacy to have been hospitalized in the previous three months.
  • Inadequate literacy has demonstrable negative effects on patient management of both diabetes and hypertension. This result is based on a sample of chronic care patients. Full analysis of these results will be complete in early 1997.
  • The health care system poses a variety of difficulties for those whose literacy is inadequate, including navigation both to and within the hospital; incomprehension of medications and of informed consent; and difficulty completing forms.

Limitations of the Research

The problem of health illiteracy has been documented only in the public hospital setting, not in the commercially insured patient population. Unless the problem is documented more broadly, the interest of clinicians, insurers, hospitals, and other providers in undertaking interventions will be limited. In addition, the TOFHLA and TOFHLA-S, while excellent research tools, are of circumscribed value in a clinical setting, due to the length of time they take to administer.

Grantmaking Structure

Initial plans called for a Phase II grant to demonstrate and evaluate the utility of interventions developed in Phase I. At the request of RWJF staff, plans were dropped for the design and testing of interventions to reduce the impact of functional health illiteracy on access to and use of care. The bridge grant allowed completion of Phase I tasks that were temporarily set aside while the researchers investigated RWJF's interest in the consequences of inadequate literacy for the treatment of chronic illness.

Communications

The researchers have been very successful at disseminating their results. To date, 7 journal articles, 11 abstracts, 2 texts, 13 presentations, and 18 media interviews have resulted from the research. One article appeared in The Journal of the American Medical Association, accompanied by an editorial. Every paper has been accepted by the researchers' first-choice publication. There have been close to 200 requests for the TOFHLA, which has been distributed to clinicians, researchers, and health care institutions. A list of publications and presentations can be found in the Bibliography. One additional paper, "The Relationship of Patient Reading Ability to Self-Reported Health and Use of Health Services" has been accepted by the American Journal of Public Health. The researchers are working on two other papers: one on cost implications of functional health illiteracy, and one on the experiences of low-literate patients who are chronically ill. These papers should be ready in early 1997. The researchers did not need Foundation assistance on dissemination. They have, however, asked that this research be considered as a future segment for RWJF's publication ABridge, to further boost dissemination. In 1994, the Foundation took the unusual step of convening a meeting with third-party payers and others with an interest or stake in this research, such as the American Hospital Association, the American Medical Association, the National Council on Patient Information and Education, and pharmaceutical researchers. Although there was a strong expression of interest in the research, none of the attendees invested in additional research at that time.

In June 1997, the researchers will present their findings at a national meeting on functional health illiteracy sponsored by Pfizer, Inc. The researchers are working on a paper on cost, which may help to establish the link between functional health illiteracy and health care costs.

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AFTER THE GRANT

For the Prudential Insurance Company, the researchers are determining the prevalence of inadequate health literacy 3,260 older Americans at managed care sites in four cities. This project could validate the researchers' previous findings outside of the public hospital setting among a commercially insured, elderly population. The Foundation has made a grant of $100,000 to Prudential (ID# 030763), assuring that study results will be published in peer reviewed journals and disseminated to other managed care plans. See Grant Results on ID# 030763.

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GRANT DETAILS & CONTACT INFORMATION

Project

Effects of Illiteracy on Patient-Provider Interactions

Grantee

Emory University School of Medicine (Atlanta,  GA)

  • Phase I grant
    Amount: $ 752,108
    Dates: November 1992 to November 1994
    ID#:  019558

  • Bridge grant
    Amount: $ 127,576
    Dates: August 1994 to June 1995
    ID#:  021118

Contact

Ruth M. Parker, M.D.
(404) 616-5800
rpark01@emory.edu
Mark Williams, M.D.
(404) 616-5288
mwillia@emory.edu

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Articles

Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W and Imara M. "The Health Care Experience of Patients with Low Literacy." Archives of Family Medicine, 5(6): 329–334, 1996. Abstract available online.

Baker DW, Parker RM, Williams MV, Coates WC and Pitkin K. "Use and Effectiveness of Interpreters in an Emergency Department." The Journal of the American Medical Association, 275(10): 783–788, 1996. Abstract available online.

Nurss JR, Baker DW, Davis TC, Parker RM, and Williams MV. "Difficulties in Functional Health Literacy Screening in Spanish-speaking Adults." Journal of Reading, 38(8): 632–637, May 1995.

Parikh, NS, Parker, RM, Nurss JR, Baker DW and Williams MV. "Shame and Health Literacy: The Unspoken Connection." Patient Education and Counseling, 27(1): 33–39, 1996. Abstract available online.

Parker RM, Baker DW, Williams MV and Nurss JR. "The Test of Functional Health Literacy in Adults: A New Instrument for Measuring Patients' Literacy Skills." Journal of General Internal Medicine, 10(10): 537–541, 1995. Abstract available online.

Parker RM, Williams MV, Baker DW and Nurss JR. "Literacy and Contraception: Exploring the Link." Obstetrics and Gynecology, 88(3 Suppl): 72S–77S, 1996. Abstract available online.

Williams MV, Parker RM, Baker DW, Parikh NS, Pitkin K, Coates WC and Nurss JR. "Inadequate Functional Health Literacy Among Patients at Two Public Hospitals." Journal of the American Medical Association, 274(21): 1677–1682, 1995. Abstract available online.

Abstracts

Baker DW, Nurss JR, Parker RM and Williams MV. "Literacy and Self-reported Reading Difficulties of Spanish-Speaking Patients." Clinical Research, 41: 586A, 1993.

Baker DW, Parker RM., Williams MV and Coates W. "The Use of Interpreters and the Impact on Patients' Knowledge of Diagnosis and Treatment." Journal of General Internal Medicine, 10(4): 118, 1995.

Baker DW, Parker RM, Williams MV and Nurss JR. "Differences in Disease Knowledge Between Literate and Low-literate Hypertensive and Diabetic Patients." Journal of General Internal Medicine, 10(4): 118, 1995.

Baker DW, Parker RM, Williams MV and Pitkin K. "The Health Care Experience of Patients with Low Literacy." Clinical Research, 41: 584A, 1993.

Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS and Nurss JR. "Differences in Disease Knowledge Between Literate and Low-literate Hypertensive and Diabetic Patients." Submitted to American Public Health Association, October 1995.

Parker RM, Baker DW, Williams MV and Nurss JR. "Functional Health Literacy of Patients at Two Public Hospitals." Journal of General Internal Medicine, 9(4): 106, 1994.

Parker RM, Baker DW, Williams MV and Nurss JR. "Inadequate Functional Health Literacy among Patients at Two Public Hospitals." Journal of General Internal Medicine, 10(4-supplement): 124, May 1995.

Parker RM, Baker DW, Williams MV, Parikh NS and Nurss JR. "Shame and Health Literacy: The Unspoken Connection." Journal of General Internal Medicine, 10(4-supplement): 113, May 1995.

Williams MV, Parker RM, Baker DW and Nurss JR. "Functional Health Literacy of Patients Presenting for Acute Care at Two Public Hospitals." Academic Emergency Medicine, 1(2): A33, 1994.

Williams MV, Baker DW, Parker RM, Coates W and Nurss JR. "The Impact of Inadequate Functional Health Literacy on Patients' Understanding of Diagnosis, Prescribed Medications, and Compliance." Academic Emergency Medicine, 2(5): 386, May 1995.

Williams MV, Baker DW, Parker RM, Coates W and Nurss JR. "Inadequate Functional Health Literacy Among Patients in Two Public Hospitals." Academic Emergency Medicine, 2(5): 349, May 1995.

Survey Instruments

Nurss JR, Parker RM, Williams MV and Baker DW. Test of Functional Health Literacy in Adults (Regular and Large Print Versions). Center for the Study of Adult Literacy, Georgia State University, Atlanta, Ga., 1993.

Nurss JR, Parker RM, Williams MV and Baker DW. Test of Functional Health Literacy in Adults — Spanish Version (Regular and Large Print Versions). Center for the Study of Adult Literacy, Georgia State University, Atlanta, Ga., 1994.

Nurss JR, Parker RM, Williams MV and Baker DW. Test of Functional Health Literacy in Adults (TOFHLA): Technical Report. Atlanta, Ga.: Center for the Study of Adult Literacy, Georgia State University, 1994.

Nurss JR, Parker RM, Williams MV and Baker DW. Test of Functional Health Literacy in Adults (TOFHLA), Directions for Administration and Scoring. Atlanta, Ga.: Center for the Study of Adult Literacy, Georgia State University, 1995.

Presentations and Testimony

Baker DW, Parker RM, Williams MV and Pitkin K. "The Health Care Experience of Patients with Low Literacy," at the National Meeting of the Society of General Internal Medicine, Washington, D.C., April 1993.

Baker DW, Parker RM, Williams MV and Pitkin K. "Literacy and Self-reported Reading Difficulties of Spanish-speaking Patients," at the National Meeting of the Society of General Internal Medicine, Washington, D.C., April 1993.

Baker DW, Parker RM, Williams MV, Nurss JR and Parikh NS. "Literacy in Health Care," At the American Public Health Association National Meeting, Washington, D.C., October 1994.

Hall R. "An Early Look at Literacy in Health Care," at the Annual Meeting of the American Society of Health Educators and Trainers, Atlanta, Ga., September 1993.

Hall R. "The Role of Literacy in the Delivery of Health Care," at the Annual Meeting of the International Patient Educators Conference, Phoenix, Ariz., April 1994.

Nurss JR. "Literacy and Health Care: Hidden Costs," at the National Conference on Family Literacy, Louisville, Ky., 1994.

Nurss JR. "Literacy and Shame: The Unspoken Connection," at the International Reading Association, Adult & Adolescent Literacy Conference, Atlanta, Ga., February 1996.

Nurss JR, Phillips LS, Lewis S, and Liao Q. "Assessing Diabetes Patients' Functional Health Literacy," at the Georgia Educational Research Association, Atlanta, Ga., 1995.

Parikh NS. "Literacy and Shame: The Unspoken Connection," at the Annual Meeting of the American Public Health Association, San Diego, Calif., October 1995.

Parker RM. "Literacy and Health," at the Annual Meeting of RWJF/HUD Homeless Families Program, Atlanta, Ga., March 1993.

Parker RM. "Literacy and Health Care," at the Conference on Literacy and Health Care, Washington University School of Medicine and the Literacy Council of St. Louis, St. Louis, Mo., March 1995.

Parker RM. "Literacy and Contraception: Exploring the Link," at the Kaiser Family Foundation/NICHHD Conference on Improving Contraceptive Use in the US: Assessing Past Efforts and Setting New Direction, Bethesda, Md., October 1995.

Williams MV. "The Impact of Literacy on Health Care," at Grand Rounds, University of North Carolina at Chapel Hill, N.C., January 1996.

Williams MV, Parker RM, Baker DW and Nurss JR. "Literacy and Health: Exploring the Links," at Medical Grand Rounds, Emory University Hospital, Atlanta, Ga., January 1996.

Print Coverage

Baker DW. "Illiteracy High Among Public Hospital Patients," The Washington Post, December 6, 1995.

Television Coverage

Interviews with Mark Williams, M.D. that appeared in newspapers and on radio and television around December 6, 1995, coinciding with the publication of the JAMA article include:

  • The Austin American-Statesman, Austin, Texas
  • The Atlanta Journal-Constitution, Atlanta, Ga.
  • The Los Angeles Times, Los Angeles, Calif.
  • The New York Times, New York, N.Y.
  • The Philadelphia Inquirer, Philadelphia, Pa.
  • The Record, Chicago, Ill.
  • Reuters News Service
  • AP Worldstream, Chicago, Ill.
  • National Public Radio
  • ABC Radio
  • CBS Radio
  • NBC Radio
  • AP Radio
  • CNN Radio
  • AARP News Distribution Service
  • CNN Headline News
  • WGNX (CBS Television), Atlanta, Ga.

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Report prepared by: Marian Bass
Reviewed by: Molly McKaughan
Program Officer: Stephen A. Somers
Program Officer: Beth Stevens

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