Dr. Jukkala is Assistant Professor and Ms. Deupree is Assistant Dean, University of Alabama at Birmingham, School of Nursing, Birmingham, Alabama. Ms. Graham is Advanced Nursing Coordinator for Professional Nursing Practice and Magnet Program Director, University of Alabama at Birmingham Hospital, Birmingham, Alabama.
The authors disclose that they have no significant financial interests in any product or class of products discussed directly or indirectly in this activity, including research support.
Address correspondence to Angela Jukkala, PhD, RN, University of Alabama at Birmingham, School of Nursing, Department of Community Health, Outcomes and Systems, 312 School of Nursing Building, 1701 University Boulevard, Birmingham, AL 35294.
More than one third of all American adults (an estimated 108 million people) have difficulty understanding and acting on health information (Kutner, Greenberg, Jin, & Paulsen, 2006). This difficulty, termed limited health literacy, impacts how patients obtain, interpret, use, and act on health information.
Health literacy is the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions. But health literacy goes beyond the individual. It also depends upon the skills, preferences, and expectations of health information providers: our doctors, nurses, administrators, home health workers, the media, and many others. Health literacy arises from a convergence of education, health services, and social and cultural factors, and brings together research and practice from diverse fields.
Limited health literacy adds between $106 and $238 billion of unnecessary costs annually to an already overburdened health care system (Vernon, Trujillo, Rosenbaum, & DeBuono, 2007). Many health care providers are unaware of the impact limited health literacy has on patients and the health care system (Pleasant & Kuruvilla, 2008) because they have not been educated to identify and address this problem (Williams, Davis, Parker, & Weiss, 2002).
To address this lack of information, the authors examined health care providers’ knowledge of the impact that limited health literacy has on both patients and the health care system. In addition, the authors investigated the usefulness of the Limited Literacy Impact Measure (LLIM), an instrument developed for this study.
Review of the Literature
Giving and receiving health information and instruction are ever increasing components of health care, yet as many as one third of patients have difficulty understanding and using these due to limited health literacy (Gazmararian et al., 1999). Limited health literacy can make it more difficult, if not impossible, for patients to be active and informed participants in their health care (Gazmararian, Williams, Peel, & Baker, 2003). This lack of ability translates into less knowledge of disease, inability to make needed lifestyle modifications, and limited ability to perform self-care (Williams, Baker, Parker, & Nurss, 1998), all of which can cause minor health issues to become major health care concerns. For example, patients can make medication administration errors or fail to understand the relationship between health and behavior. Limited health literacy can also negatively affect participation in preventive health practices such as cancer screenings (Dolan et al., 2004) or weight loss (Kennen et al., 2005). Further, it raises morbidity and mortality associated with chronic disease (Baker et al., 2007). The end result is less than optimal health care outcomes and unnecessary use of health care resources. In 1998, Friedland estimated that limited health literacy costs from $30 to $73 billion U.S. dollars per year. In less than 10 years, these estimates have increased to $106 to $238 billion (Vernon et al., 2007).
For those patients who read at or below the national average of a 6th grade level, understanding health care instructions or educational materials is even more challenging because most are written at or above the 10th grade reading level (David et al., 1998; Davis et al., 1994). Many individuals with limited health literacy also have difficulty understanding verbal instructions due to a limited vocabulary and difficulty following complex sentence structures (Baker, Parker, Williams, & Clark, 1998).
It is probable that fault lies with both the patient and the health care provider when patients are noncompliant with health care instructions. Many health care providers lack the knowledge and skill necessary to identify and intervene for patients with limited health literacy (Bass, Wilson, Griffith, & Barnett, 2002; Rogers, Wallace, & Weiss, 2006); thus, they fail to ensure patient understanding and comprehension of health care instructions (Schillinger et al., 2003). It is important that medical, nursing, pharmacy, and other health-related schools focus on improving communication with patients and include curriculum specific to health literacy (Williams et al., 2002). Medical providers often have health literacy resources available through the American Medical Association; however, similar resources for nurses are not available.
Despite limited health literacy having been identified as a national primary area of need by the Institute of Medicine (Nielsen-Bohlman et al., 2004), information describing health care provider awareness of the impact of limited health literacy on patients and the health care system is limited.
Setting and Sample
This study was conducted at a large academic health center located in a southern state. Individuals attending a university-sponsored presentation on health literacy were invited to complete the LLIM immediately prior to the educational offering. Participants were queried about health literacy and its impact on the health care system and the individual patient.
The study was approved by the Institutional Review Board at the University of Alabama at Birmingham. Responses to the LLIM were anonymous. A completed survey implied informed consent to participate. There were no direct incentives for completion of the questionnaire.
Instrumentation and Analysis
Participants answered eight multiple-choice questions about the impact that limited health literacy can have on either patients or the health care system. Several additional questions were included to gather minimal background information. Instrument completion took approximately 10 minutes. Responses to each question are reported. Data were analyzed using the SPSS software, version 14.0.
Data were collected over a 3-day period in March 2008. A total of 268 interdisciplinary health care professionals and students were invited to participate in the study.
Content validity was established through examination of the instrument by experts in the fields of nursing, medicine, and health literacy. As the instrument was not intended to be a scale, an analysis of scale reliability was not conducted.
A total of 230 individuals participated in the study. Professionals from various disciplines participated, including nursing (n = 82), dentistry (n = 15), and medicine (n = 31). Forty students from across the university campus participated. Fifteen participants did not provide information describing their background. An overall participation rate of 86% was achieved.
Knowledge of Limited Health Literacy
Sixteen percent (n = 37) of participants reported not having heard of health literacy before attending the presentation. The health care provider group reporting the highest rate of no prior health literacy knowledge was nurses (n = 14; 17.1%).
Overall and discipline-specific knowledge of the impact of limited health literacy on patients and the health care system is presented in the Table. Participants were most knowledgeable about the relationship between level of education and low health literacy (92.6% answered correctly). Participants were least knowledgeable about the prevalence of limited health literacy in the United States (12% answered correctly). Of interest was one health care professional’s comment that health literacy has “nothing to do with my practice.”
Table: Knowledge of Limited Health Literacy
Analysis of variance was computed to evaluate differences in knowledge between various disciplines and students. No significant difference was found in overall knowledge level between health care professionals and students.
Findings from this study describe health care providers’ and students’ knowledge of the impact of limited health literacy on the health care system and the individual patient. Fewer than 12% of participants knew that more than 30% of the U.S. population has difficulty understanding health care information and instructions. Because limited health literacy is prevalent and affects a patient’s ability to use the complex health care system (Rudd, 2007), this is troubling.
Almost 25% (n = 52) of participants believed that health literacy could be determined based on race or ethnicity, culture, age, or socioeconomic status. To compound this problem, health care providers may erroneously believe that patients with higher levels of education are not at risk for having limited health literacy (n = 27; 7.4%). Recent studies have revealed that medical residents are often unable to identify patients with limited health literacy (Bass et al., 2002; Rogers et al., 2006).
Although most participants (n = 200; 88.1%) were aware that the majority of Americans read at the 6th grade level, 24% (n = 56) also knew that average consent forms are usually written at the 10th grade level. Given the awareness of reading levels, the continued use of consent forms that require a much higher reading level is troubling.
This research used a convenience sample of individuals who were attending an elective presentation on health literacy. Attending the presentation implies both an interest in and an awareness of health literacy. Therefore, the generalizability of findings to other health care providers may be limited. It is also possible that only individuals feeling comfortable with their knowledge of health literacy agreed to participate in the research; however, the high overall participation rate negates this concern.
Including health literacy during educational preparation is essential (Nielsen-Bohlman et al., 2004) to adequately prepare student nurses for the challenges of providing care in the clinical setting. Nurses comprise the largest segment of the health care work force and are charged with ensuring patient education. Inability to recognize and intervene for patients with limited health literacy will have an effect on nurses’ ability to successfully fulfill one of their most vital roles—educating patients on self-care.
Current Health Care Providers
Many practicing health care providers, most of whom did not receive information on health literacy as part of their study curriculum, need to become better educated regarding health literacy. Several programs exist that are trying to incorporate health literacy into the health care setting. One example is the Pfizer-sponsored Clear Health Communication initiative (Pfizer, 2006). This initiative focuses on ways that health care providers can better educate patients and clues that providers can look for to identify patients with limited health literacy. The Clear Health Communication initiative offers tips on how to explain health care information to patients and families as well as how to package educational materials looking at readability and literacy level. Another program, aimed at nursing, is the BSN Residency program developed by the University HealthSystem Consortium (2008) and the American Association of Colleges of Nursing. The University HealthSystem Consortium, which consists of university hospitals across the country, and the American Association of Colleges of Nursing partnered to create a residency program for BSN graduates that supports further education about critical information needed to care for patients in a university hospital setting. A portion of this program addresses health literacy and patient teaching.
The Joint Commission (2008) recently initiated a program entitled “Speak Up” that focuses on empowering patients to be members of the health care team and become actively involved in their own health care. Handouts and materials are available for health care providers to display or provide to patients that explain the program and encourage patients’ active participation in their treatment.
Health Care Organizations
Just as health care providers need to increase their knowledge of ways to better meet the needs of individuals with limited health literacy, health care organizations need to make health literacy an organizational priority (Murphy-Knoll, 2007). Developing educational programs specific to health literacy and developing policies for educational materials (e.g., reading levels, fonts, and pictures) will increase the likelihood of meeting the needs of patients with limited health literacy.
Improved health literacy will only be accomplished if health systems, health care providers, and individual patients work together. Additional research with larger and more diverse groups of students and health care professionals may yield insight into their knowledge of the impact limited health literacy has on individuals and the health care system. Items included on the LLIM could be used as the basis for the development of useful and practical instrumentation that measures overall health care provider knowledge.
Limited health literacy is a burden for patients, health care providers, and the health care system as a whole. Health care providers need accessible educational programs to ensure they have the skills to identify and educate patients with limited health literacy. Likewise, individuals need access to educational resources to increase their health literacy. These actions combined may decrease health care costs and improve health outcomes for individuals with limited health literacy.
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Knowledge of Limited Health Literacy
|Overall (N= 230)||Nursing (n= 82)||Medicine (n= 31)||Dentistry (n= 15)||Student (n= 40)||Other (n= 47)|
| Individuals with high levels of education may or may not have limited health literacy.||213 (92.6%)||76 (92.7%)||31 (100%)||15 (100%)||37 (92.5%)||42 (89.4%)|
| The average American reads at the 6th grade level.||200 (88.1%)||39 (47.6%)||10 (32.3%)||5 (33.3%)||16 (40.0%)||21 (44.7%)|
| Health literacy level cannot be determined based on race or ethnicity, culture, age, or socioeconomic status.||178 (77.4%)||64 (78.0%)||25 (80.6%)||12 (80.0%)||31 (77.5%)||37 (78.7%)|
| Thirty percent of the U.S. population has difficulty understanding health care information and instructions.||27 (11.7%)||7 (8.5%)||3 (9.7%)||4 (26.7%)||2 (5.0%)||6 (12.8%)|
| Limited health literacy can cause minor health issues to become major concerns.||207 (90.0%)||74 (90.2%)||31 (100%)||13 (86.7%)||36 (90.0%)||42 (89.4%)|
| Limited literacy drains resources from patients, employers, and physicians.||212 (92.2%)||77 (93.9%)||29 (93.5%)||14 (93.3%)||37 (92.5%)||42 (89.4%)|
| Limited health literacy is estimated to cost between $30 and $73 billion per year.||45 (19.6%)||15 (18.3%)||8 (25.8%)||2 (13.3%)||10 (25.0%)||8 (17.0%)|
| The average consent form is written at the 10th grade reading level.||56 (24.3%)||17 (20.7%)||10 (32.3%)||5 (33.3%)||11 (27.5%)||9 (19.1%)|