To maintain their own health and the health of their families and communities, consumers rely heavily on the health information that is available to them. This information is at the core of the partnerships that patients and their families forge with today?s complex modern health systems. This information may be provided in a variety of forms ? ranging from a discussion between a patient and a health care provider to a health promotion advertisement, a consent form, or one of many other forms of health communication common in our society. Yet millions of Americans cannot understand or act upon this information. To address this problem, the field of health literacy brings together research and practice from diverse fields including education, health services, and social and cultural sciences, and the many organizations whose actions can improve or impede health literacy. Health Literacy: Prescription to End Confusion examines the body of knowledge that applies to the field of health literacy, and recommends actions to promote a health literate society. By examining the extent of limited health literacy and the ways to improve it, we can improve the health of individuals and populations.

Health literacy : a prescription to end confusion

OBJECTIVE: To review the relationship between literacy and health outcomes DATA SOURCES: We searched MEDLINE, Cumulative Index to Nursing and Allied Health (CINAHL), Educational Resources Information Center (ERIC), Public Affairs Information Service (PAIS), Industrial and Labor Relations Review (ILLR), PsychInfo, and Ageline from 1980 to 2003 STUDY SELECTION: We included observational studies that reported original data, measured literacy with any valid instrument, and measured one or more health outcomes Two abstractors reviewed each study for inclusion and resolved disagreements by discussion DATA EXTRACTION: One reviewer abstracted data from each article into an evidence table; the second reviewer checked each entry The whole study team reconciled disagreements about information in evidence tables Both data extractors independently completed an 11-item quality scale for each article; scores were averaged to give a final measure of article quality DATA SYNTHESIS: We reviewed 3,015 titles and abstracts and pulled 684 articles for full review; 73 articles met inclusion criteria and, of those, 44 addressed the questions of this report Patients with low literacy had poorer health outcomes, including knowledge, intermediate disease markers, measures of morbidity, general health status, and use of health resources Patients with low literacy were generally 15 to 3 times more likely to experience a given poor outcome The average quality of the articles was fair to good Most studies were cross-sectional in design; many failed to address adequately confounding and the use of multiple comparisons CONCLUSIONS: Low literacy is associated with several adverse health outcomes Future research, using more rigorous methods, will better define these relationships and guide developers of new interventions

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Literacy and health outcomes

ContextDespite the importance of diversity of cancer trial participants with
regard to race, ethnicity, age, and sex, there is little recent information
about the representation of these groups in clinical trials.ObjectiveTo characterize the representation of racial and ethnic minorities,
the elderly, and women in cancer trials sponsored by the National Cancer Institute.Design, Setting, and PatientsCross-sectional population-based analysis of all participants in therapeutic
nonsurgical National Cancer Institute Clinical Trial Cooperative Group breast,
colorectal, lung, and prostate cancer clinical trials in 2000 through 2002.
In a separate analysis, the ethnic distribution of patients enrolled in 2000
through 2002 was compared with those enrolled in 1996 through 1998, using
logistic regression models to estimate the relative risk ratio of enrollment
for racial and ethnic minorities to that of white patients during these time
periods.Main Outcome MeasureEnrollment fraction, defined as the number of trial enrollees divided
by the estimated US cancer cases in each race and age subgroup.ResultsCancer research participation varied significantly across racial/ethnic
and age groups. Compared with a 1.8% enrollment fraction among white patients,
lower enrollment fractions were noted in Hispanic (1.3%; odds ratio [OR] vs
whites, 0.72; 95% confidence interval [CI], 0.68-0.77; P<.001) and black (1.3%; OR, 0.71; 95% CI, 0.68-0.74; P<.001) patients. There was a strong relationship between age and
enrollment fraction, with trial participants 30 to 64 years of age representing
3.0% of incident cancer patients in that age group, in comparison to 1.3%
of 65- to 74-year-old patients and 0.5% of patients 75 years of age and older.
This inverse relationship between age and trial enrollment fraction was consistent
across racial and ethnic groups. Although the total number of trial participants
increased during our study period, the representation of racial and ethnic
minorities decreased. In comparison to whites, after adjusting for age, cancer
type, and sex, patients enrolled in 2000 through 2002 were 24% less likely
to be black (adjusted relative risk ratio, 0.76; 95% CI, 0.65-0.89; P<.001). Men were more likely than women to enroll in
colorectal cancer trials (enrollment fractions: 2.1% vs 1.6%, respectively;
OR, 1.30; 95% CI, 1.24-1.35; P<.001) and lung
cancer trials (enrollment fractions: 0.9% vs 0.7%, respectively; OR, 1.23;
95% CI, 1.16-1.31; P<.001).ConclusionsEnrollment in cancer trials is low for all patient groups. Racial and
ethnic minorities, women, and the elderly were less likely to enroll in cooperative
group cancer trials than were whites, men, and younger patients, respectively.
The proportion of trial participants who are black has declined in recent
years.

https://jamanetwork.com/journals/jama/articlepdf/198896/JOC32348.pdf

Participation in Cancer Clinical Trials: Race-, Sex-, and Age-Based Disparities

ContextHealth literacy is a measure of patients' ability to read, comprehend,
and act on medical instructions. Poor health literacy is common among racial
and ethnic minorities, elderly persons, and patients with chronic conditions,
particularly in public-sector settings. Little is known about the extent to
which health literacy affects clinical health outcomes.ObjectivesTo examine the association between health literacy and diabetes outcomes
among patients with type 2 diabetes.Design, Setting, and ParticipantsCross-sectional observational study of 408 English- and Spanish-speaking
patients who were older than 30 years and had type 2 diabetes identified from
the clinical database of 2 primary care clinics of a university-affiliated
public hospital in San Francisco, Calif. Participants were enrolled and completed
questionnaires between June and December 2000. We assessed patients' health
literacy by using the short-form Test of Functional Health Literacy in Adults
(s-TOFHLA) in English or Spanish.Main Outcome MeasuresMost recent hemoglobin A1c (HbA1c) level. Patients
were classified as having tight glycemic control if their HbA1c
was in the lowest quartile and poor control if it was in the highest quartile.
We also measured the presence of self-reported diabetes complications.ResultsAfter adjusting for patients' sociodemographic characteristics, depressive
symptoms, social support, treatment regimen, and years with diabetes, for
each 1-point decrement in s-TOFHLA score, the HbA1c value increased
by 0.02 (P = .02). Patients with inadequate health
literacy were less likely than patients with adequate health literacy to achieve
tight glycemic control (HbA1c ≤7.2%; adjusted odds ratio [OR],
0.57; 95% confidence interval [CI], 0.32-1.00; P
= .05) and were more likely to have poor glycemic control (HbA1c ≥9.5%;
adjusted OR, 2.03; 95% CI, 1.11-3.73; P = .02) and
to report having retinopathy (adjusted OR, 2.33; 95% CI, 1.19-4.57; P = .01).ConclusionsAmong primary care patients with type 2 diabetes, inadequate health
literacy is independently associated with worse glycemic control and higher
rates of retinopathy. Inadequate health literacy may contribute to the disproportionate
burden of diabetes-related problems among disadvantaged populations. Efforts
should focus on developing and evaluating interventions to improve diabetes
outcomes among patients with inadequate health literacy.

https://jamanetwork.com/journals/jama/articlepdf/195143/JOC12049.pdf

Association of health literacy with diabetes outcomes.

The treatment of chronic illnesses commonly includes the long-term use of pharmacotherapy. Although these medications are effective in combating disease, their full benefits are often not realized because approximately 50% of patients do not take their medications as prescribed. Factors contributing to poor medication adherence are myriad and include those that are related to patients (eg, suboptimal health literacy and lack of involvement in the treatment decision–making process), those that are related to physicians (eg, prescription of complex drug regimens, communication barriers, ineffective communication of information about adverse effects, and provision of care by multiple physicians), and those that are related to health care systems (eg, office visit time limitations, limited access to care, and lack of health information technology). Because barriers to medication adherence are complex and varied, solutions to improve adherence must be multifactorial. To assess general aspects of medication adherence using cardiovascular disease as an example, a MEDLINE-based literature search (January 1, 1990, through March 31, 2010) was conducted using the following search terms: cardiovascular disease, health literacy, medication adherence, and pharmacotherapy. Manual sorting of the 405 retrieved articles to exclude those that did not address cardiovascular disease, medication adherence, or health literacy in the abstract yielded 127 articles for review. Additional references were obtained from citations within the retrieved articles. This review surveys the findings of the identified articles and presents various strategies and resources for improving medication adherence.

Medication Adherence: WHO Cares?

Objective. —To determine the ability of patients to complete successfully basic reading and numeracy tasks required to function adequately in the health care setting. Design. —Cross-sectional survey. Setting. —Two urban, public hospitals. Patients. —A total of 2659 predominantly indigent and minority patients, 1892 English-speaking and 767 Spanish-speaking, presenting for acute care. Main Outcome Measure. —Functional health literacy as measured by the Test of Functional Health Literacy in Adults (TOFHLA), an instrument that measures ability to read and understand medical instructions and health care information presented in prose passages and passages containing numerical information (eg, prescription bottle labels and appointment slips). Results. —A high proportion of patients were unable to read and understand written basic medical instructions. Of 2659 patients, 1106 (41.6%) were unable to comprehend directions for taking medication on an empty stomach, 691 (26%) were unable to understand information regarding when a next appointment is scheduled, and 1582 (59.5%) could not understand a standard informed consent document. A total of 665 (35.1%) of 1892 English-speaking patients and 473 (61.7%) of 767 Spanish-speaking patients had inadequate or marginal functional health literacy. The prevalence of inadequate or marginal functional health literacy among the elderly (age ≥60 years) was 81.3% (187/230) for English-speaking patients and 82.6% (57/69) for Spanish-speaking patients, and was significantly higher ( P Conclusions. —Many patients at our institutions cannot perform the basic reading tasks required to function in the health care environment. Inadequate health literacy may be an important barrier to patients' understanding of their diagnoses and treatments, and to receiving high-quality care. ( JAMA . 1995;274:1677-1682)

Inadequate functional health literacy among patients at two public hospitals.

Shame and health literacy: the unspoken connection

Objectives To understand the difficulties that patients with poor reading ability have interacting with the health care system and to identify the coping mechanisms they use to deal with these problems. Design Focus groups and individual interviews with patients who are illiterate and patients with low literacy. Setting Two large, urban public hospitals. Participants Sixty patients with marginal to poor reading abilities as measured by the Rapid Estimate of Adult Literacy in Medicine were interviewed in focus groups or individual interviews. Measurements and main results Patients with low literacy harbor a deep sense of shame, which is reinforced by hospital staff who become frustrated or angry when someone cannot complete a form or read instructions. Seeking medical care is intimidating for patients with low literacy because they cannot understand signs and registration forms. Many patients recounted serious medication errors resulting from their inability to read labels. To cope with these problems, the patients with low literacy rely heavily on oral explanations, visual clues, and demonstrations of tasks to learn new material. Most also use a friend or family member as a surrogate reader. Conclusions Patients with poor reading ability have important problems accessing the health care system, understanding recommended treatments, and following the instructions of providers. Because of their shame, patients with low literacy may be unwilling to disclose their problem to health care providers, and screening tests of reading ability may be necessary to identify those who need special assistance. Patients' coping mechanisms give insight into possible interventions that may improve their interactions with the health care system.

The health care experience of patients with low literacy.

We investigated patients' willingness to have their reading ability documented in their medical records and the degree of shame and embarrassment associated with such disclosure. Structured interviews were conducted among a consecutive sample of 283 primary care patients at an urban public hospital. Patients' literacy was measured using the Rapid Estimate of Adult Literacy in Medicine (REALM). Self-report of degree of shame and embarrassment related to literacy skills was measured using an orally administered questionnaire. Fifty-one percent of patients had low literacy skills (≤sixth grade) and 27.9% were assessed as having marginal literacy (seventh–eighth grade). Half (47.6%) of patients reading at or below the third-grade level admitted feeling ashamed or embarrassed about their difficulties reading, compared with 19.2% of those reading at the fourth–sixth-grade level and 6.5% of those reading at the seventh–eighth-grade level (p < 0.001). More than 90% of patients with low or marginal literacy report...

Patients' Shame and Attitudes Toward Discussing the Results of Literacy Screening

For the uninsured and many low-income people, hospital emergency departments (EDs) are a crucial entryway to the health care system. New York City's uninsured-27 percent of the nonelderly population in 1998, up from 20 percent in 1990-rely heavily on the ED for their medical care. Residents who regularly get their health care at an ED do not have regular doctors or continuity in their care, use costlier services, and often receive treatment that could have been avoided. Low-income New Yorkers may be depending on emergency department care even more as Medicaid enrollment declines and physician reimbursement rates are cut. This Issue Brief describes patterns of ED use through-out New York City and discusses some of the ways to improve the availability of primary care services and reduce ED dependency.

Nina S. Parikh

Papers

Inadequate functional health literacy among patients at two public hospitals.

Shame and health literacy: the unspoken connection

The health care experience of patients with low literacy.

Patients' Shame and Attitudes Toward Discussing the Results of Literacy Screening

Emergency department use in New York City: a substitute for primary care?