Tuesday, December 12, 2006

Is Health Literacy Enough? The Failure to Incorporate Social and Behavioral Science Principles into Diabetes Self-management Education- Yifang Lee

The definition of health literacy cited in Healthy People 2010 is the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (US Department of Health and Human Services, 2000). Wide Range Achievement Test (WRAT), reading subtest Rapid Estimate of Adult Literacy in Medicine (REALM), and Test of Functional Health Literacy in Adults (TOFHLA) are most commonly used instruments for measuring health literacy. Since 1995, there have been studies emphasizing the importance of health literacy. Evidence is beginning to accumulate about the prevalence of limited health literacy and its association with the use of health care services and health outcomes (Morris et al, 2006). For example, according to Scott et al(2002), adjusted analyses of cervical and breast cancer screening rates indicated that women with inadequate literacy had significantly greater odds of never having had a Pap smear or no mammogram in the past two years. In addition, according to Schillinger et al (2002), among diabetics, lower TOFHLA scores were related to worse glycosylated hemoglobin (HbA1c) levels and reports of retinopathy and cerebrovascular disease.

Diabetes is one of the most common diseases in the U.S., and type 2 diabetes is most common form of diabetes, affecting 90% - 95% of the 18.2 million people with diabetes in 2005 (Haines,2005). Diabetes is associated with an increased risk for a number of serious, sometimes life-threatening complications such as high blood pressure, heart disease, stroke, blindness, kidney disease, nervous system disease and amputations. Although Diabetes cannot be cured, it can be controlled. Take type 2 diabetes for example, early in the disease, many people can keep their blood glucose levels near normal by controlling their weight, exercising, and following a sensible diet. Often, people with type 2 diabetes must take oral anti-diabetic medications to control their glucose, and insulin may also be needed (NIA, 2000). In fact, diabetes is a self-help disease, and self-management is a cornerstone of diabetes care. Patients with diabetes are expected to perform daily self-management activities to help avoid diabetes-related morbidity and mortality (Sarkar et al, 2006). Self-management activities differ depending on types of diabetes or severity. In general, self-management activities include checking blood glucose and blood pressure, checking feet, choosing food items according to recommended diet, following meal plan, brushing teeth and flossing, exercising regularly, and taking medicines. Research shows that health outcomes for adults with diabetes are better for those who can optimally incorporate self-management of their diabetes into their daily lives (Sigurdardottir, 2005).

Currently, there are many diabetes self-management education programs, including nationwide programs such as National Diabetes Education Program (NDEP), and institutional programs in every state recognized by American Diabetes Association. For instance, in Massachusetts, there are about 85 programs sponsored by different hospitals or other institutions. In these programs, educators will conduct a thorough, individualized needs assessment with the participation of the patient, family, or support systems, prior to the development of the education plan and intervention. The needs assessment should include health history, nutritional history, previous use of medication, current mental and physical health status, family support, current self-care management practices, and lifestyle practices such as occupation, vocation, education level, financial status, cultural, and religious practices. Recent years, diabetes education programs start to address the challenge of patient care for people with diabetes who have low literacy and/or numeracy (math) skills, and are dedicated to developing new strategies. For example, Dr. Russell Rothman and his team of Vanderbilt University in Nashville, Tennessee plan to demonstrate a new educational program that teaches diabetes management skills that compensate for poor reading and math ability among diabetes patients (ADA, 2005). However, is health literacy enough?

Argument 1
Diabetes self-management education programs have failed to consider other factors that influence diabetes self-care. Certainly, limited health literacy is a main barrier to learning self-management skill. However, many other factors can be determinants of patients’ learning results and their adherence to diabetes self-care activities, such as self-efficacy and social support.

Self-efficacy is one of predictors. According to the theory of self-efficacy, self-efficacy and outcome expectancy exert powerful effect on behavior. Perceived self-efficacy will determine how much effort people will put into a task and their level of persistence to complete the task (Bandura, 1982). In terms of diabetes self-management, with low self-efficacy, patients are less likely to accomplish the task of self-control of diabetes, such as foot care, optimal diet and self-monitoring of blood glucose. A study conducted by Sarkar (2006) among patients with type 2 diabetes at two primary care clinics at a public hospital showed that with each 10% increase in self-efficacy score, patients were more likely to report optimal diet (0.14 day more per week), exercise (0.09 day more per week), self-monitoring of blood glucose (increased odds of daily SMBG by 16%) and foot care (increased odds of daily foot care by 22%). Therefore, the authors concluded that self-efficacy is significantly associated with diabetes self-management activities, and the associations between self-efficacy. Actually, self-efficacy and self-management might influence each other. With higher self-efficacy, patients are more likely to fulfill those activities, and achieving a higher degree of self-care, patients may gain more self-efficacy. As a result, health professionals should consider self-efficacy when educating patients. More encouragement or helping patients to set achievable self-management goals might be beneficial to patients with low self-efficacy levels at the beginning.

Social support is another factor that influences patients’ adherence to self-care activities. Although family support is included in the assessment prior to the development of the education plan, it is not clear how family support is incorporated into the education. It is certain that social support is significantly associated with self-management. Some studies showed that diabetic patients who enjoy good social support have stability and are more likely to adhere to management regimen (Flynn, 2004), and social support plays a part in predicting food adherence ( Gonder-Frederick et al., 2002). In addition, Marzilli’s study (1999) found that eating behaviors of others can influence eating behaviors of diabetic patients, especially if they live together. A study conducted by Klomegah (2006) examined the specific types of social support people with diabetes received, and it was discovered that while both emotional support such as expressions of intimacy or esteem and instrumental support such as helping in doing the grocery, helping in choosing and cooking healthy foods, and eating healthily around diabetes are correlated with dietary adherence, instrumental support appears to be more important as it has a stronger association to dietary adherence than does emotional support. Therefore, education targeting patients’ family members behaviors may also be needed since their behaviors can greatly influence diabetic patients’ adherence to self-management regimen.

Argument 2
Diabetes self-management education programs fail to address the care providers’ role that also determines a patient’s performance on self-care in the programs. That is, how physicians treat their patients, how supportive other health professionals are and how educators instruct the patients will also influence patients’ self-management behaviors. According to the Health Beliefs and Attributions Model (Marteau, 1995), patients’ health outcomes are determined by three variables: the patients’ behavior, the patients’ cognitions and the medical procedures and treatments that the patients receive. Patients’ cognitions are determined by health professionals’ behavior and cognitions and other influences including psychological, social and cultural factors such as age, gender, religion, ethnicity, education, and self-efficacy. Much effort has been made to improve the patients’ self-management behaviors at the patient level. For example, National Diabetes Education Program developed materials tailored for American Indians and Alaska Natives, and factors such as age, ethnicity, language, health literacy and mental health status that influence patients’ adherence to self-care activities will be considered in diabetes self-management education. However, less effort has been made at the care provider level. Although institutions such as the American Association of Diabetes Educators offer continuing education for health professionals to learn better teaching methods, care providers’ attitudes are often overlooked. For instance, in terms of physical activities for diabetes patients, Kris Berg, an exercise physiologist at the University of Nebraska at Omaha said physicians do not promote exercise as well as they could. When a physician sees a diabetic patient, the focus of the visit is to only evaluate health status such as blood glucose levels (Trecroci, 2001). In fact, the patient-physician relationship such as communication and empathy have been shown to be important to patient's adherence (Vermeire et al, 2001) and ability to complete self-care tasks (Rose et al, 2002). A study conducted by Bonds et al (2004) found that with higher levels of patient trust in physicians, patients reported lower levels of hassles, lower difficulty in completing care activities and increases completion of self-management tasks. Another study conducted by Safran et al (1998) also showed that patient trust was significantly associated with patient satisfaction and self-reported adherence to lifestyle changes. A possible cause for this association suggested by Bonds et al was that these patients may have higher trust levels because they have been engaged as an active participant in the health care decision by their provider. Therefore, since health professionals’ behaviors and attitudes have great effect on the degree patients obtain, process and understand health information, education that promotes relationships between patients and health professionals, especially physicians, at both patient and care provider level may affect the patients’ engagement in diabetes self-management.

Moreover, we know that health literacy is considered as a determinant of patients’ adherence to diabetes self-management activities, and generally, health literacy is viewed as a capacity of a person, measuring of an individual’s reading ability, vocabulary, and math skill. However, health literacy is a dynamic state of an individual during a health care encounter (Baker, 2006). That is, health literacy also depends on the relationship between individual communication capacities, the health care system, and the broader society. From this view, for example, if patients lack sufficient communication abilities, they may have difficulties in expressing themselves and reporting their problems regarding self-care, and care providers would not know their difficulties or assume that patients understand the information given. Lack of sufficient communication abilities will not only influence how well a patient can learn but also relationships between patients and health professionals. Therefore, when health literacy is measured as an individual ability, educational materials developed targeting health literacy will still be insufficient. Some personal self-care problems may not be known due to patients’ lack of communication skills. In this case, health literacy should not be assessed as an individual ability, and more patience and time will be needed for health professionals and educators to help the patients.

Argument 3
Diabetes self-management education programs fail to identify the external barriers for diabetes patients to implement self-management activities. Take diet for example, diet is an integral part of the treatment of diabetes and maintenance of glycemic control. The American Diabetes Association recommends that people with diabetes consume a diet low in fat and high in fiber-containing foods such as fruits, vegetables, and whole grains (American Diabetes Association, 2002). The recommended healthy food is usually more expensive, so diabetes patients with lower income are less likely to follow the diet plan because they cannot afford it. A survey among patients living in East Harlem, NY conducted by Horowitz et al (2003) showed that that 77% of people with diabetes in East Harlem had an annual income of less than $20,000. 40% of these people did not follow a diabetic diet because of concerns about money, and this behavior was independently associated with poorer diabetes outcomes. According to Health Belief Model (Rosenstock, 1974), changes in behavior depend on five factors: perceived harm, perceived severity, perceived benefits, perceived barriers, and self-efficacy. Although most patients understand the importance and benefits (perceived benefits) of following the diet plan, cost of food (perceived barriers) is a cause that discourages them to change eating behaviors. This is an important element since minorities and those with lower incomes bear a disproportionate burden of both the prevalence and the complications of Type 2 diabetes (Harris et al, 1998). As a result, to implement better self-management education, care providers, dietitians, and educators need to develop educational material that focus not only on ways to manage diet properly, but also on ways to do so economically.

Furthermore, availability of food is another barrier for diabetes patients. In the U.S., Latinos and African Americans are less likely than Whites to be in control of their blood sugar levels; they have 2 to 4 times Whites’ rate of diabetes complications, such as renal disease and blindness, and they have higher diabetes-specific mortality rates (Mokdad, 2001). A study conducted by Horowitz et al (2004) compared availability of diabetes-healthy foods in a racial/ethnic minority neighborhood in East Harlem, which consisted of 50% Latino and 40% African American, with those in the adjacent, largely White and affluent Upper East Side in New York City. The prevalence of diabetes in East Harlem is nearly double that in New York City overall (Thorpe et al, 2003).Among people with diabetes, mortality and hospitalization rates in East Harlem are nearly double those of New York City as a whole (Krasner, 1994). The study showed that although East Harlem does not have a shortage of food markets, and some stores do carry diabetes-healthy foods in East Harlem, the neighborhood has fewer large stores (which generally have a greater variety of foods) and fewer stores that carry recommended food items. The inconvenience of purchasing diabetes-healthy food might discourage people to follow diet plan. Therefore, to assist patients to follow diet plan, educators need to identify this factors and help them overcome the barrier, such as developing alternative list of recommended healthy food, which is more available.

In summary, diabetes self-management activities are complex, requiring much time, persistency and involve all aspects of a person's life. Diabetes self-management education programs are developed to help people understand diabetes self-care and accomplish those tasks such as checking blood glucose and blood pressure, foot care, optimal diet, oral care and exercise. Much effort has been made to develop better educational tools and materials, and health professional have emphasized the importance of social factors such as ethnicity, socioeconomic status, language and health literacy in self-management. Recently, health literacy has been brought into focus as a strong determinant of health behaviors, and several studies proved that it is truly a key element. However, if Diabetes self-management education programs aim to have great effect on patients’ diabetes health behaviors for a long run, there are still many things needed to be addressed. Influential factors should be identified not only at patient level but also at health provider level and health environment level, then effective interventions in education programs can be developed targeting those factors and barriers.

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