CCH:Education in the Treatment of Diabetes

Chapter 35
Education in the Treatment of Diabetes
Richard S. Beaser
Katie Weinger
Lisa M. Bolduc-Bissell
This building given by thousands of patients and their friends provides an opportunity for many to control their diabetes by methods of teaching hitherto available to the privileged few.
Chiseled in stone on the front of the Joslin Clinic Building, erected in 1955, the above inscription reflected Elliott P. Joslin's conviction that education was not just a part of diabetes treatment, it was the treatment. Dr. Joslin's concern about educating both patients with diabetes and their families began more than 100 years ago, when such instruction was considered by many to be a luxury. Over the last two decades, the importance of education has become more widely recognized. As the World Health Organization commented in 1980, “Education is a cornerstone of diabetic therapy and vital to the integration of the diabetic into society” (1).
This growing recognition of the vital role of education in the treatment of diabetes led to the development and periodic updating of the National Standards for Diabetes Education by the National Diabetes Advisory Board in 1983 (2,3,4). This was followed by the development of a recognition program for diabetes education by the American Diabetes Association (ADA) (5) and of a certification program for diabetes educators by the American Association of Diabetes Educators (6) now administered by a separate organization, the National Certification Board for Diabetes Educators.
Progress in making educational programs available to everyone with diabetes has been slowed by the reluctance of third-party payers to reimburse for educational services in the United States (7). This is now changing. In 2001, the Center for Medicare and Medicaid Services (CMS) began paying for Medicare patients to attend group diabetes education programs and for medical nutrition therapy visits. Many private insurers followed suit. However, diabetes education programs are still at risk, with many closing their doors because of poor reimbursement. One nationwide study found that more than 60% of people with diabetes have received little or no diabetes education (8,9). Unfortunately, little evidence suggests that this is changing. Despite the obstacles, however, healthcare professionals who treat people with diabetes continue their commitment to patient education through the development of new programs and research into more effective methods of teaching the principles and practice of diabetes self-care.
WHY IS SELF-MANAGEMENT EDUCATION IMPORTANT IN THE TREATMENT OF DIABETES? [Print Section]
The importance of improved glycemic control in delaying the onset and progression of serious microvascular complications is now clear (10,11). Treatment of diabetes leading to improved control is a 24-hour-a-day activity and often includes important changes in lifestyle, most of which persons with diabetes must provide for themselves on a daily basis. These efforts require careful balancing of various lifestyle functions and activities that are integral parts of the daily routine. Thus, the goal of diabetes self-management education is not simply to increase knowledge about diabetes, but rather to support individuals with diabetes and their families in their efforts to incorporate diabetes treatment into their lifestyles. Of course, the more that people with diabetes understand how to make these required changes and what the rationale is behind them, the more successful they will be in their diabetes self-management.
Diabetes self-management education provides many benefits. Education allows people with diabetes to take control of their condition, integrating the daily routines of self-monitoring
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and discipline into their lifestyle rather than permitting this condition to overwhelm them and control their lives. Education in diabetes self-management trains people to take the necessary actions to improve their metabolic control, which helps maintain health and well-being and reduces the risk of diabetic complications. The well-educated person with diabetes may also decrease the costs related to the condition—both the direct cost of medical care and the indirect costs related to lost income or productivity (12).
Diabetes education is both an art and a fledging science. Only within these past 20 years has research begun to examine the role and effectiveness of education in diabetes self-management, and future research is needed to further evaluate and clarify optimal methods for this educational process (4). In addition, in this litigious age, as the value of education gains credence, the provision of proper education to people with diabetes by a healthcare provider may help reduce the risk of malpractice suits.
The evolution of the scientific component of diabetes education has traveled a long and somewhat bumpy road. Initial studies examining diabetes education were difficult to design, perform, and evaluate, and when they were completed, their validity was often the subject of controversy among healthcare professionals. One reason for this disagreement was the assumption by researchers studying diabetes education that it was an integral component of care. Thus, the usual study design contrasted intensive education with less-intensive education rather than with no education or a “placebo” form of education.
Some small studies comparing these two forms of education showed no differences in glycemic control between groups. For example, a trial comparing minimal versus intensive education showed similar improvement in the two groups (13). Good control was related to the duration of school education, absence of anxiety, and quality of control and degree of self-confidence upon entry into the study. A similar study, with admitted socioeconomic bias affecting some of these factors, showed that education led to improvements in knowledge and behavior but not in improvements in metabolic control (14). However, during the last two decades, many randomized clinical trials and smaller studies have examined the efficacy of diabetes education (4), and several well-done meta-analyses (15,16,17,18,19) that evaluated the quality of education summarized the results of research in diabetes education. These meta-analyses, along with more recent trials (20,21,22,23,24), provide convincing evidence that diabetes education is effective in supporting patients' efforts to improve and/or maintain physiologic and quality-of-life outcomes.
Currently, research in diabetes education has moved beyond the question of whether it is important and is beginning to focus on the science of education, addressing questions that clarify educational outcomes, determine which groups of patients respond best to which form of education, and evaluate which are the most efficient and cost-effective methods of providing education (25,26,27,28). Diabetes education already encompasses the family and social support; researchers are now beginning to consider public-health aspects of diabetes education at the community and possibly the national level (29).
Education Improves Well-Being and Quality of Life [Print Section]
People with diabetes must make what some perceive as being overwhelming lifestyle changes, yet their failure to accept these changes may result in inadequate diabetes control. Emotions related to the psychological burden of diabetes, such as anxiety, depression, and poor self-confidence, have been shown to be associated with poor control (13,30,31,32,33). Thus, a properly designed education program not only should present facts but also should address the emotional responses to diabetes.
Education improves self-care practices (16,17,22,34) but a mere increase in knowledge and skills does not guarantee an improvement in metabolic parameters (14). Several psychological factors, having been implicated as barriers to improved glycemic control, play an important role in translation of knowledge and skills into the desired metabolic results. These factors include emotion-based coping styles (35,36), diabetes-related emotional distress (33), and lack of readiness to change (37). For individuals to be willing and able to make all the necessary lifestyle changes, they must have knowledge and skills plus a positive emotional outlook about their diabetes, believing that the changes they make will lead to better health.
An educational program that demonstrably improves parameters of emotional well-being in addition to addressing self-care practices has been shown to lead to improved metabolic control that was sustained over 6 months (38,39). The authors of these studies suggested that emotional well-being itself may contribute to improved self-care (38). Others contend that, for many patients, education about diabetes and self-care alone enhances emotional well-being (40,41,42), which further boosts self-care ability. In the first randomized controlled trial to demonstrate an additive effect of psychological intervention on glycemic control, Grey and her colleagues (43,44) demonstrated that adolescents who received training in coping skills along with methods of intensive diabetes treatment improved glycemic control and self-care behaviors more than did adolescents who received only intensive treatment instruction. However, whether emotional well-being leads to improvement in self-care or vice versa has not been clearly determined. More research is needed to clarify the associations among education, improved self-care, and improved emotional outlook.
Education Improves Self-Care Management [Print Section]
Even after one accepts that emotional well-being is a crucial component of the educational intervention, the complexity of the diabetes treatment regimen itself often leads to confusion and misunderstanding that interferes with the ability to manage one's diabetes. Diabetes education can play an important role in clarifying the treatment regimen, reinforcing the skills necessary to successfully manage diabetes, and supporting efforts to integrate self-management behaviors into one's life. Several meta-analyses and clinical trials examining the effects of diabetes education found that education leads to improved self-care behaviors as well as to improved knowledge, and metabolic and psychological outcomes (15,16,17,19,22,34,38,45). Rubin and his colleagues (45) noted a differential effect among self-care behaviors: behaviors requiring changes in lifestyle such as in diet and exercise were more difficult to maintain over time than were less-demanding behaviors such as self-monitoring of blood glucose (SMBG).
Education Improves Metabolic Control [Print Section]
The Diabetes Control and Complications Trial (DCCT) and the United Kingdom Prospective Diabetes Study (UKPDS) established the principle that improvement in glycemic control is beneficial and that maintaining glucose levels as near to normal as possible results in reduction in the risk of development and progression of serious microvascular complications. The importance of education to the training of patients with diabetes about their treatment and to supporting their self-management efforts to improve their glycemic control became apparent early during the 9-year course of the DCCT (46,47). Moreover, the importance of a multidisciplinary team consisting of at least one healthcare practitioner/educator such as a registered nurse or nutritionist was definitively documented (46,47,48). The roles of
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other team members, such as the podiatrist, psychologist, ophthalmologist, pharmacist, exercise physiologist, among others, are now being recognized as well (12,20,21,22,38,39,49,50,51).
Although initial studies attempting to demonstrate that education improves diabetes control produced variable results, again it was through meta-analyses that examined the cumulative evidence that the conclusion can be drawn that diabetes education can result in a moderate to large effect on improving glycemic control (15,16,17,18,19). For glycemic control, the magnitude of this effect was particularly evident in studies that were completed after measurements of glycosylated hemoglobin (HbA1c) came into widespread use (15). Traditional diabetes education also resulted in improved knowledge and self-care behaviors with a small effect on psychological outcomes (17). Padgett and coworkers (16) found that diet instruction had the largest effect size while relaxation training had the weakest.
Other studies also have underscored the importance of selecting the right outcome criteria for measurement. If the wrong outcomes are measured, education may not appear to be responsible for the desired improvements, both when looked at in relation to various outcomes other than metabolic control (52) and when examined over extended periods (34,53). For example, the Diabetes Education Study reported minimal differences between the education and control groups in measurements of their knowledge but found numerous, significant differences in their skills and self-care behaviors. Such studies suggest that adult learning theory holds true: Individuals tend to learn what is important to them and what they can relate to their own life experience (54). Not surprisingly, discrepancies may exist between what healthcare providers teach and what individuals with diabetes perceive as important. These studies also point out the difficulties of measuring the effects of education after a single educational intervention that focuses primarily on facts about diabetes rather than on behaviors and that does not include ongoing follow-up (55) or that measures outcomes in terms of selected metabolic parameters only. Such limited studies often fail to detect all the potential long-term benefits of an ongoing educational experience (56). Others have made the important point that improved glycemic control may not be apparent unless other treatment factors, such as the treatment regimen and individual metabolism, are taken into account (57).
Although the studies cited suggest that education does improve metabolic control, most studies do not examine education in isolation. In an extensive review of the diabetes education literature, Clement (58) emphasized that negative studies did not examine diabetes education that was integrated into medical treatment. Therefore, one must conclude that education alone does not improve metabolic control. This point was nicely demonstrated in a randomized controlled study of nurse case management that included a 12-hour education program. After 1 year, the combined medical/education case management approach led to a greater improvement in glycemic control as measured by HbA1c of 1.1% as compared with the control group receiving the usual care (21). These data and the emphasis that the DCCT placed on education to help patients reach glycemic targets (46,48,59,60,61) support the suggestion that the maximal benefit of diabetes education is realized when education is integrated into diabetes care.
Education Enhances the Prevention and Early Detection of Complications [Print Section]
Evidence is now emerging that diabetes education plays an important role in the prevention and early detection of diabetes complications. In fact, the Revised National Standards for Diabetes Self-Management Education have included prevention, detection, and treatment of both acute and chronic complications among the ten content areas for diabetes education (4).
A case-control study of 886 subjects with long-term diabetic complications and 1,888 control subjects without complications found that, in addition to being male, older, and having type 1 or insulin-treated type 2 diabetes, patients who did not receive any kind of educational intervention were at increased risk of developing complications. Furthermore, self-management of insulin, a skill that is usually dependent on receiving diabetes education, had a protective effect on the risk of complications (62).
In a randomized control trial of 352 patients and four healthcare provider practice teams, Litzelman and her colleagues (23) found that patients with type 2 diabetes who were assigned to an educational intervention with patient, healthcare provider, and educational systems were less likely to have serious foot lesions and more likely to report appropriate self-care behaviors than were patients assigned to usual care. In addition, healthcare providers who received practice guidelines, informational flow sheets on foot-related risk factors, and who had reminder notices placed on their patients charts were more likely to examine patients' feet and to refer patients for podiatry appointments.
Education Decreases Costs of Care [Print Section]
While it is generally agreed that education can be a major factor in decreasing costs of hospitalization, not until this fact can be proven conclusively regarding diabetic patients will ample money be made available for the needed education.
This statement by Joslin's Dr. Leo Krall (63) opened the section in earlier editions of this text that discussed how education could decrease the cost of diabetes care. Finally, in this edition, the evidence is beginning to accrue that, indeed, Dr. Krall's wish for data may be coming true. However, the path to this conclusion has followed a difficult and convoluted route, and the conclusion has been slow to gain acceptance among many, particularly those responsible for paying the bills. In addition, as Krall pointed out at the Joslin symposium held at the 2000 International Diabetes Federation meetings, from a worldwide perspective, economic environments vary—not all of them resembling that of the United States.
Yet, spurred by the managed-care movement, cost-effectiveness and the impact on quality of life are now being measured, and slowly the recognition that diabetes education is a reasonable expense is beginning to gain acceptance. This trend is seeing a confluence of endpoints. Medical professionals are looking to improve parameters such as HbA1c values or complication rates, assuming that the good stemming from improvements in these numbers is justification in and of itself. However, the people who pay the bills—the managed-care executives initially and, ultimately, the consumers of healthcare services—view parameters such as dollars and cents and, in particular, impact on quality of life for dollar spent to ensure that the benefits reaped by an intervention such as education warrant the expense.
Demonstrating that education is a cost worth bearing has been promulgated over the last few decades. However, during the 1990s, enough momentum seemed to have gathered for people to finally begin to accept this principle. Prior to that, a traditional endpoint was a reduction in hospitalizations, which may not necessarily reflect the entire picture in this new millennium in which outpatient medicine and pharmaceutical costs are a focus of the cost-conscious healthcare insurance executives. Nevertheless, hospitalizations are still costly and serve as a reasonable yardstick.
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To get a sense of the battle that has been waged, we should look back to 1981, at the dawn of the era of “intensive insulin therapy” heralded by the availability of SMBG and HbA1c measurements. This quiet revolution in diabetes management gave us the tools to target normoglycemia more realistically and to monitor glucose patterns in a normal setting without the need for hospitalization, yet increasing the importance of self-care skills if these new tools were to be used to their optimal efficacy.
At that time, educational deficits were clearly a cause for increased costs of medical interventions. In 1981, Geller and Butler (64) judged that 27% of the hospital admissions for diabetes complications over a 1-year period were the result of educational deficits and that an additional 20% were due to a combination of educational, psychological, and socioeconomic deficits. In a 1985 edition of this textbook, Krall (63) recounted the classic, but not scientifically controlled, report of 100 patients surveyed who were admitted to the Joslin Diabetes Center with foot infections. Only 38% of these patients had received any diabetes education. The same year, Scott et al. (65) from New Zealand suggested that education lowers admission rates among patients with diabetes. Of a group of 902 insulin-using patients, 79 required hospitalization, of whom 11% had received education previously and 89% had not.
In a 1983 report from Maine (66), based on its experiences as one of the few states that at that time provided some reimbursement for diabetes education, 38.5% fewer people were hospitalized and 28.3% fewer hospitalizations were necessary among patients who had participated in an educational program. The experience in Rhode Island reported in 1985 by Fishbein (67) also demonstrated a reduction in the number of admissions after attendance in an outpatient education program.
However, these and other studies that have appeared over the years had seemingly not provided convincing proof that education does save money. Criticisms of various studies, exemplified by a review by Kaplan and Davis (68), typified the dilemma. Reviewing studies used by the ADA to support third-party payment for outpatient education and nutritional counseling (69), these authors identified various defects in study design such as deficiencies in the use of control groups, in patient randomization, in cost accounting, and in clearly demonstrating actual savings. They also pointed out that duration of hospital stay and rate of hospital admission can be affected by multiple factors influencing hospitalization practices that are unrelated to diabetes education or even to actual medical conditions.
The crux of the argument at that time was expressed succinctly by Anderson (70) in a reply to the Kaplan and Davis report (68), pointing out that patients appear to need education to follow their daily routine of diabetes self-care. As with the impact on medical parameters cited earlier, asking that an educational program alone results in reduction in cost without considering the other variables that affect such outcome measures is ascribing more power to educational intervention than is warranted.
However, during the 1990s we passed a significant milestone, as those who view healthcare in the aggregate, rather than one patient at a time, began to recognize that patient education was an important component of the multifactorial effort to achieve improvements in diabetes control and reductions in complications and thus achieve better outcomes. Studies such as the DCCT and UKPDS provided enough momentum to establish the economic value, albeit indirect, of patient education. Although the DCCT had already proven that intensive therapy reduces microvascular and neuropathic complications (7,71), the cost-effectiveness of intensive therapy itself was subsequently demonstrated (72). Implicitly, patient education is central to establishing a successful intensive therapy program, and thus patient education contributes to a cost-effective outcome.
Concurrently, other studies examined the costs of care for patients with diabetes in the managed-care environment. In a health maintenance organization (HMO) in which 3.6% of the patients had diabetes, these patients accounted for more than three times their allotment of costs, or 11.9% of total healthcare delivery costs, attributable in significant part to long-term and short-term complications (73). This study suggests that reducing the occurrence of complications would generate savings, accomplished through disease management, which includes to a considerable degree, of course, patient education. Other studies further underscore these economic benefits of improving diabetes control and preventing complications (74,75,76), as well as the benefit of adding quality time to a person's life (77).
The ADA has participated in this argument for many years, strongly advocating proper support for patient education. Even before the DCCT results became available, the ADA stated that every patient has a right to accessible and affordable patient-education services (78) and has issued a policy statement that “supports and encourages reimbursement for outpatient education and nutrition counseling that meet acceptable standards for persons with diabetes” (69). Again, in 1990, the ADA issued a policy statement (79) that noted “the omission of outpatient education as a benefit in many insurance and healthcare financing plans constitutes a major barrier to the availability and accessibility of these services” and supported “adequate reimbursement and payment for outpatient diabetes education services that meet accepted standards.” Such lack of coverage may be the result of either the failure of insurance companies to include coverage in their policies or a choice made by employers not to include such coverage in the insurance benefits they offer their employees when arranging insurance benefits.
More recently, the ADA stated (80) that “self-management education is a critical part of the medical plan for people with diabetes, such that medical treatment of diabetes without systematic self-management education can be regarded as substandard and unethical care.” The ADA suggests that such education will ultimately reduce costs.
Throughout this period, economic factors as well as technologic advances have exerted an increasing influence on the setting for and scope of diabetes patient education. The ability to perform SMBG has eliminated the need to hospitalize a person just to monitor multiple glucose levels throughout the day. Inpatient education programs are now restricted to people with medical conditions that cannot be adequately addressed in an outpatient setting and thus justify hospitalization; the shorter hospital stays now mandated limit the extent of material that can be taught (81). Thus, diabetes education must increasingly be delivered through outpatient programs (82).
Ironically, however, the evolution from inpatient to outpatient education has been negatively influenced by economic factors as well. Inpatient education frequently was provided as part of the “overhead” service covered by the cost of hospitalization. However, because education is often inadequately covered by insurance in many states, the cost of outpatient education is often borne directly by the patient. Thus, because inpatient education is restricted and outpatient education is unaffordable, all education may be unavailable for most patients.
Outpatient education does, however, have advantages over inpatient education. There is flexibility of timing of the sessions, extension of the educational experience over weeks or months, ability to educate in a normal life setting rather than in an artificial inpatient environment, and the opportunity for follow-up
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sessions. The trends of recognition of both the quality and the importance of outpatient education hopefully will continue, but until all people with diabetes can have some access to insurance-supported outpatient education, the full potential cannot be met.
In summary, we are finally reaching the point at which most people accept that patient education can improve diabetes control and decrease the risk of acute and chronic complications and thus is a significant component of an overall management plan. These results, in turn, can lead to reduced costs and improved quality of life. Patient education alone does not accomplish this, but patient education as part of a comprehensive management program does. Thus, the cost of educational services and the supplies that must accompany them, such as test strips and meters, are slowly being included in many coverage plans—not universally, but it is happening.
The following was written in the last edition of this text: “We hope that in the next edition of this textbook the report on the financing of diabetes education will be quite different!”
Well, it is! Maybe it should not be termed “quite” different, but it is different enough and definitely evolving enough in the right direction to be most encouraging!
Malpractice Protection [Print Section]
Sensitivity to the potential for malpractice lawsuits for alleged negligence has become part of the practice of medicine. This concern also extends to the act of conveying information about diabetes. Legal precedents in United States law exist that require healthcare providers to be sure their patients receive adequate education and that outline the potential liability for either not educating or poorly educating their patients (83).
In light of the progress during the last decades in demonstrating that improved control and avoidance of complications can be accomplished through education, the risk of potential lawsuits stemming from inadequate or improper education is theoretically significant. Although economic motivation pushes healthcare organizations to recognize the need to support patient education, the humanistic approach of the healthcare providers that leads to the recommendation for such education (with, we hope, some crossover motivation in the best of all worlds!), both groups may be further encouraged by the potential for liability of not doing so.
Therefore, it is prudent for healthcare professionals to ensure that their patients receive education of proper quality. Unless a program is known to meet established standards, programs recognized by the ADA or educators certified by the National Certification Board for Diabetes Educators are the most reliable sources of proper education. Healthcare professionals should encourage patients to attend such programs and document in the patient's record that they did so.
THE DIABETES EDUCATION PROGRAM [Print Section]
Diabetes self-management education is the process of providing people with diabetes with experiences that favorably influence their understandings, attitudes, and practices related to living well with diabetes (84). At its best, an educational program empowers those with diabetes to achieve optimal self-management of their condition (85). A successful educational program does not occur by accident; it is carefully planned by the healthcare team and then executed by that team with the individual with diabetes as an integral part of the team. The most successful diabetes self-management education is individualized (37,61,86,87), is integrated into medical treatment, and addresses psychosocial and behavioral components of care (88,89).
The goal of any educational program is to help patients with diabetes gain the knowledge and skills that enable them to care for themselves and to develop the attitudes that will enable them to make behavioral changes. A national task force representing organizations interested in diabetes (ADA, Veterans Administration, Centers for Disease Control, Indian Health Service, American Dietetic Association, American Association of Diabetes Educators, Diabetes Research and Training Centers) has recently revised the National Standards for Diabetes Education (4) (Table 35.1). These standards provide guidelines for the format of diabetes education and a clear outline of the content areas that should be addressed (4). The ADA provides an education recognition program that evaluates diabetes education according to the National Standards and certifies those programs that meet or exceed the standards.
TABLE 35.1. National Standards for Diabetes Self-Management Education (DSME)
Standard 1. The DSME entity will have documentation of its organizational structure, mission statement, and goals and will recognize and support quality DSME as an integral component of diabetes care.
Standard 2. The DSME will determine its target population, assess educational needs, and identify the resources necessary to meet the self-management needs of the target population(s).
Standard 3. An established system (committee, governing board, advisory body) involving professional staff and other stake holders will participate annually in a planning and review process that includes data analysis and outcome measurements and addresses community concerns.
Standard 4. The DSME entity will designate a coordinator with academic and/or experiential preparation in program management and the care of individuals with chronic diseases. The coordinator will oversee the planning, implementation, and evaluation of the DSME entity.
Standard 5. DSME will involve the interaction of the individuals with diabetes with a multifaceted educational instructional team, which may include a behaviorist, exercise physiologist, ophthalmologist, optometrist, pharmacist, physician, podiatrist, registered dietitian, registered nurse, other health care professionals, and paraprofessionals. DSME instructors are collectively qualified to teach the content areas. The instructional team must consist of at least a registered dietitian and a registered nurse. Instructional staff must be certified diabetes educators or have recent didactic and experiential preparation in education and diabetes management.
Standard 6. The DSME instructors will obtain regular continuing education in the areas of diabetes management, behavioral interventions, teaching and learning skills, and consulting skills.
Standard 7. A written curriculum, with criteria for successful learning outcomes, shall be available. Assessed needs of the individual will determine which content areas listed below are delivered.

    Describing the diabetes disease process and treatment options
    Incorporating appropriate nutritional management
    Incorporating physical activity into lifestyle
    Using medications (if applicable) for therapeutic effectiveness
    Monitoring blood glucose and urine ketones (when appropriate), and using the results to improve control
    Preventing, detecting, and treating complications
    Preventing (through risk-reduction behavior), detecting, and treating chronic complications
    Goal setting to promote health and problem solving for daily living
    Integrating psychosocial adjustment to daily life
    Promoting preconception care, management during pregnancy, and gestational diabetes management (if applicable)

Standard 8. An individualized assessment, development of an educational plan, and periodic reassessment between participant and instructor(s) will direct the selection of appropriate educational materials and interventions.
Standard 9. There shall be documenting of the individual's assessment, educational plan, intervention, education, and follow-up in the permanent confidential education record. Documentation also will provide evidence of collaboration among instructional staff, providers, and referral sources.
Standard 10. The DSME entity will use a continuous quality improvement process to evaluate the effectiveness of the education experience provided and determine opportunities for improvement.

Copyright © 2000 American Diabetes Association. From Mensing C, Boucher J, Cypress M, et al. National standards for diabetes self-management. Diabetes Care 2000;23:682–689. Reprinted with permission from the American Diabetes Association.
The Educators [Print Section]
In the years after the discovery of insulin, Dr. Joslin was among the first to recognize that the responsibility of patient care lay mainly with the patients themselves. “The patient is his own nurse, doctor's assistant and chemist,” he wrote in the first comprehensive guide to self-care, A Diabetic Manual for the Mutual Use of Doctor and Patient, in 1924 (90), shortly after the discovery of insulin. Recognizing the need for patient education, Joslin showed his nurses how to give insulin, calculate the diet, and balance insulin requirements with that diet. These nurses then visited patients in their homes throughout New England, sometimes staying with families for weeks, to teach patients and families to plan menus, prepare food, and administer several injections daily.
The role of the “teaching nurse” has since evolved and expanded and now includes other healthcare providers with special diabetes-related skills. Diabetes educators, as they are now called, include nurses, nutritionists, social workers, exercise physiologists, psychologists, pharmacists, and physicians. Their expertise in diabetes care and education may qualify them to take an examination to become Certified Diabetes Educators (CDEs) or Board-Certified Advanced Diabetes Managers (BC-ADM).
These diabetes educators form the basis of the team approach to diabetes education (91). Working together in both inpatient and outpatient settings, each member of the team provides the patient with specialized expert services. For example, nurses help patients master the skills necessary to inject insulin and monitor blood glucose levels and adapt these skills to their lifestyle, nutritionists work with patients to develop realistic meal plans, and psychologists and social workers focus on coping mechanisms. The person with diabetes and key family members are now recognized as important players in the team who must be involved in the educational program (92,93,94). This multifaceted team effort, which includes the patient and the physician, provides the most complete approach to diabetes education and care (12,20,22,39,50).
The Setting for Education [Print Section]
Education for diabetes care may be provided in a variety of settings, such as clinics, hospitals, education centers, a physician's office, or the patient's home (95). The program can be formalized and presented in a classroom setting or provided in a one-to-one fashion. It may be presented in a carefully planned educational session or may arise spontaneously from responses to questions asked during a routine office visit (96).
In educational sessions, the size of the groups may vary and the forms of interaction used may include, but not be limited to, discussion, lecture, and interactive learning activities (97,98,99). Innovative educational techniques, such as programs incorporating
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computers, the Internet, and other audiovisual media, can enhance the educational program (99,100,101,102).
Availability of staff, the needs of patients, the subject matter, and economic factors often dictate the choice of setting. For example, general information about the various kinds of insulin and their respective activity patterns might be presented in a group setting. However, the teaching of specific skills such as drawing insulin into the syringe is best carried out on an individual basis or in small groups that are no larger than six people. This small size provides the healthcare professional with the opportunity to help each patient individually learn the techniques necessary for carrying out these essential activities. Similarly, general information about monitoring glucose levels might be presented in a group setting, but the actual learning of the skill should take place in a setting in which every patient can benefit from the individual attention of the healthcare professional. However, we must also keep in mind that reimbursement guidelines often dictate the details of such education sessions and their structure.
In addition, as with many other “school” settings, the educational experience is not limited to formalized instructional sessions; much of diabetes education occurs through the interactions among patients that take place in diabetes treatment units and camp-type settings (103,104). Information and understanding gained through the sharing of personal experiences can help patients improve both self-management and coping skills in ways not possible with more formalized instruction.
An example of such a program is the Diabetes Outpatient Intensive Treatment (DO IT) program at Joslin Diabetes Center (Table 35.2). This behavior modification program has evolved from the historic Diabetes Treatment Unit, an inpatient program originally intended for diabetes education and treatment. Because of current reimbursement for this education, the DO IT program permits the same medical management, with accompanying education and group cohesiveness but on an outpatient basis. During this 3.5-day program, patients are evaluated by a physician, nurse, dietitian, exercise physiologist, and mental health professional. After the initial assessment, the remaining 3 days consist of medical care and education. Free time is also available for social interaction among patients. Follow-up shortly after completion of the program is recommended, both via telephone and office visits, to ensure that patients are able to apply what they have learned during the program to their everyday lives.
TABLE 35.2. Schedule for 3-Day Program of the Diabetes Outpatient Intensive Treatment (DO-IT) Program of the Joslin Clinic
Activity     Times     Tuesday     Wednesday     Thursday
Lab     7:30–8:00 a.m.     X     X     X
Breakfast and self-instructional computer modules     8:00–9:15 a.m.     Check-in
Choose from breakfast buffet
Computer time     Check-in
Choose from breakfast buffet
Computer time     Check-in
Choose from breakfast buffet
Computer time
Class 1     9:15–10:00 a.m.     Diabetes Know-how     Exercise: Moving Toward Better Control     Blood Glucose Interpretation
Class 2     10:00–10:45 a.m.     Food for Thought     Responding to High Blood Glucose Levels     Understanding Fats
Break     10:45–11:00 a.m.                
Class 3     11:00–12:00 p.m.     Understanding Your Diabetes Medications     Healthy Food Choices     Staying on Top: Investing in Your Health
Lab     12:00–12:15 p.m.     X     X     X
Lunch     12:15–1:00 p.m.
1:00–2:00 p.m.     Choose from lunch buffet
Exercise class     Choose from lunch buffet
Exercise
Class/family support group     Choose from lunch buffet
Bringing It all Together
Class 4     2:00–2:45 p.m.     Skills Training (as needed)
Check-out with case manager     Skills Training (as needed)
Check-out with case manager     Final check-out with case manager
Since 1992, the Joslin's DO IT program has been a recognized education program as per ADA standards. One criterion necessary to achieve this recognition is to prove the effectiveness of the program as it relates both to clinical aspects of diabetes care and to the quality of life of these persons with diabetes. These outcomes data have shown an average decrease in HbA1c of levels of 1.5% over a 3- to 6-month period following the participation in the DO IT program. Attendees whose HbA1c levels were greater than 10% were shown to reduce the level by an average of 2.5% during the same time period. In a clinical survey conducted after the program, participants of the program reported a 38% improvement in their perception of their diabetes-related problems. In addition, program evaluation has shown a decrease in emergency department visits, hospitalizations, and lost time from work or school for patients after their participation in the DO IT program.
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Who Should Be Educated [Print Section]
The National Standards for Diabetes Education recognizes that diabetes education is an integral component of diabetes care (4), and the ADA recommends education for all people with diabetes at the time of diagnosis and at regular intervals throughout their lifetime (5). These standards recognize the right of each person to understand the nature of his or her condition, to be given the tools to manage and control the condition, and to have this information updated routinely. Unfortunately, we are far short of that goal. However, in a survey of 2,318 persons with diabetes, 59% of those with type 1 diabetes, 49% of those with insulin-treated type 2 diabetes, and 24% of those with type 2 diabetes not treated with insulin had attended a class or program about diabetes at some time during the course of their illness (8). The challenge for the team is to gain access to the patient at regular intervals and to meet the needs of each patient through assessment, implementation, and evaluation.
Patient Assessment [Print Section]
Assessment of the patient's and family's readiness to learn is the first step in the educational process (37,105). Concurrent illnesses, new diagnosis of diabetes, or psychosocial problems may affect a patient's willingness or ability to learn. A patient who has just received a diagnosis of pancreatic carcinoma may not be ready to discuss insulin administration. Similarly, a patient recovering from surgery may be more interested in starting on solid food than learning self-monitoring techniques. The key to assessment is communication with the patient. If education starts when the patient is emotionally and experientially ready, there is a better chance of engaging him or her in the entire educational process (106).
The emotional response to diabetes can have an impact on the patient's ability to hear and absorb information. Denial may be the patient's first reaction to the diagnosis of diabetes and can impair his or her ability to learn (107). The healthcare provider can assist the patient by recognizing this response as denial, acknowledging that it may be a stage in the long process of adapting to a chronic illness, and supporting the patient's effort to cope with the disease. Involvement in support groups and individual therapy may help the patient move from denial to successful adaptation.
Assessment of knowledge, skills, and attitudes about diabetes is an ongoing process that starts with the initial chart review and interview. Many patients do not recall medical advice and some report never having received specific self-care recommendations (108,109,110). Assessment of the person's knowledge of his or her actual treatment prescription is as important for those with diabetes of long duration as for those with newly diagnosed diabetes. Use of a conversational style, rather than a question-and-answer session, helps to establish rapport and to give the healthcare professional some idea of the patient's lifestyle (111). The healthcare professional should learn to listen to the patient, to be sympathetic and understanding, and to accept that the patient's priorities may not be the same as those of the healthcare team. It is important to remember that diabetes is an intrusion into daily life, that most people will still have significant gaps in their knowledge about diabetes even after having the condition for 20 years, and that it is ultimately the patient who makes the final decisions about how he or she will approach the disease (94,112). Recognizing and accepting these realities will allow the healthcare professional to set reasonable, achievable, and mutually acceptable goals. The initial assessment should be clearly documented in the chart and updated on a regular basis (4,113,114,115).
Because the backgrounds of the team members may be very different, many different assessments take place. A registered dietitian, for example, may assess the current eating habits of someone newly diagnosed with diabetes and provide that person with a meal plan as close to this as possible. An exercise physiologist may teach a person with diabetes how to correctly adjust his or her insulin dose to prevent hypoglycemia during exercise. A nurse educator may assess a patient's skills and general diabetes knowledge and provide him or her with the necessary information. In some institutions, CDEs are seen as just that: diabetes educators.
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Using this rationale, any CDE can meet the diabetes education needs of a patient to a certain extent. For example, if a patient needs to learn how to self-administer insulin and no nurse educator is available to do this, as a CDE, a registered dietitian or exercise physiologist could teach this skill. Then, at a later date, the patient may follow up with a nurse educator to review technique as well as acquire other necessary information related to insulin. Patients starting exercise programs can review general insulin or food adjustment with a nurse educator and then schedule to see an exercise physiologist for more detailed adjustments.
At the Joslin Clinic in Boston, educators use a team approach to patient assessment and education. A “new patient” to the clinic will see an educator solely for an educational assessment (i.e., to determine the patient's current level of diabetes knowledge and skills and to schedule appointments with “appropriate” educators based on this assessment). This serves two purposes: It enables the patient to recognize diabetes educators as a part of his or her healthcare team and allows an effective and efficient way to recognize and address the needs of the patient. The primary goal is to identify and focus on the educational needs of the patient.
The assessment process provides an opportunity for the patient and family to express their healthcare beliefs and their agenda for that visit and to express particular needs or goals (116). The information gained not only provides the healthcare team with data about educational needs but also guides the team in management issues. The team has the opportunity to answer questions, provide positive feedback, and encourage proper self-care behaviors.
In addition to assessing the patient's readiness to learn (37) and stage of adaptation to diabetes (117), the healthcare professional must obtain information on the patient's ethnic or cultural background, occupation, socioeconomic status, support systems, personality type, and health beliefs before looking at the patient's knowledge of diabetes (118). Other factors that may have an impact on learning include age, gender, literacy level, and level of education (119). This information is invaluable in getting a sense of the patient and the approach to education and treatment that would be most helpful and reasonable for that patient.
An evaluation of functional ability helps the healthcare provider plan how to teach skills such as SMBG and insulin administration (120). The patient's dexterity may be affected by arthritis or neuropathy. Vision changes due to retinopathy may be evident at a relatively young age. Some patients have a difficult time admitting to their vision deficit, so it is important to assess the patient's skill in these areas at the initial visit and again at regular intervals. Relatives or close friends should definitely be included in this part of the assessment process to determine whether they are willing and able to assume some responsibility for care of the patient.
Reported educational level appears to be a poor predictor of reading ability, because a person's actual reading level may be significantly lower. Nevertheless, it may be helpful to ask about educational experience (121). In this context, a question concerning how the person learns best will provide some guidelines for deciding whether to use audio, video, or written materials or a one-on-one or classroom setting. Recent research suggests that health literacy, the ability to understand instruction and health information, may impact how well individuals manage their diabetes (122).
What Is Taught [Print Section]
The educational plan is developed by the team—addressing educational needs and treatment goals identified by both the patient and the team. Education begins with “survival” knowledge (i.e., the information absolutely necessary for a person with diabetes to have to function independently and safely at home). For some, this may be as simple as identifying when to call the healthcare provider. For others, SMBG and use of insulin and glucagon may be survival skills. Everyone with diabetes must also have some general knowledge about diabetes to understand when it is necessary to call the healthcare provider for help.
The educational assessments done by various diabetes educators provide the basis for the individualization of teaching. Having determined the patient's knowledge about diabetes, psychosocial history, attitudes about diabetes, and eating and exercise habits, the educator can then formulate an educational plan that reflects the patient's specific needs.
As outlined by the National Standards for Diabetes Self-Management Education (Table 35.1) (4), the actual content of the diabetes education program is based on assessed needs of the individual or individuals. Diabetes education programs do not need to be structured in the model of a medical or nursing course on diabetes (89) but instead should be structured in a way that provides maximal benefits for patients in terms of health outcomes. Many education programs begin with areas identified by the patient as priorities. Addressing the patient's pressing issues then allows the patient to be more attentive to the issues the provider has identified as important (89).
The National Standards recommend that the curriculum include an explanation of diabetes disease process and treatment options to help individuals make informed treatment choices and facilitate self-directed behavior. An explanation of treatment modalities, including the use of insulin, insulin delivery systems, oral anti diabetes medications, the meal plan, and exercise, are important aspects of the curriculum. Other key components of a well-rounded educational program are methods for incorporating nutritional management and physical activity into one's lifestyle. The goals of monitoring; the types, descriptions, and limitations of monitoring devices; and instruction in the use and interpretation of SMBG results are also necessary parts of initial and ongoing education.
Patients also need information about the recognition, treatment, and prevention of acute complications such as hyperglycemia, hypoglycemia, and ketoacidosis and the prevention of chronic complications through risk-reduction behaviors (foot inspection and care). The effects of illness on diabetes and sick-day rules are a critical part of any diabetes education. Guidelines for monitoring blood glucose and urine ketones, for modifying food intake, and when to call the healthcare team are essential skills for the patient. Equally important components of care include helping patients set realistic, achievable goals for their diabetes care and discussion of the psychosocial adjustment to diabetes. Finally, patients may need specialty education during specific times such as preconception or pregnancy, the onset of complications, or the initiation of new treatments.
The section on prevention, treatment, and rehabilitation of chronic complications should include strategies for coping with the physical changes and losses that complications may bring. It is extremely important to stress the benefits that blood glucose control can have for both the short- and long-term. Focusing on the prevention of complications through risk reduction is a vital part of this section. A discussion of personal adaptation to life with a chronic disease and the impact of diabetes on the family will also help patients understand some of their feelings.
Care of the skin, teeth, and feet is part of the hygiene segment of a diabetes education program. Self-care measures that help prevent complications, address the need for regular checkups, and outline the effects of smoking, alcohol, and drug use are addressed in this section. The class on the benefits and
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responsibilities of care explores the patient-professional partnership in planning care and helps the patient develop short- and long-term goals. Exploration of the use of healthcare systems and community resources can help the patient find support and services in the community.
Educational Methods [Print Section]
Diabetes education has benefited from principles of adult learning (54) and instructional design (123). The use of basic educational principles as guides can increase the success of a diabetes education program, regardless of its setting. However, continued evaluation of the applicability and usefulness of principles borrowed from educational theory is important for the continued improvement of educational programs in diabetes (119). For example, the active involvement of the patient in all aspects of the educational endeavor, including decisions about the treatment program, is one such principle that is not universally recognized as being important for successful diabetes education.
Unfortunately, many diabetes education programs frequently foster too passive a role for the patient (124). Many educators have suggested that when patients participate in decisions about their care (86), improvements are seen in measures of both clinical condition and attitudes about health-related quality of life. In a controlled study, Greenfield and associates (125) met with patients before a scheduled office visit with their physicians to review past medical concerns and to focus and improve patients' information-seeking skills. Patients rehearsed negotiation skills, addressing obstacles, such as feelings of embarrassment or intimidation, that stood in the way of their gaining information from the physician. Patients so coached were twice as effective as those in the control group at eliciting information from the physician. Improvements in levels of HbA1 were significantly greater in these individuals, as were reductions in factors such as days lost from work as a result of illness.
Others also have emphasized the relationship between treatment adherence and the ways in which the physician and the patient reach treatment decisions (126,127,128,129). Commenting on some of these studies, Sims and Sims (130) concluded that patients will adhere to their treatment plans more consistently if they feel a sense of ownership of the plans. Today, emphasis is placed on the influence of patient priorities on that person's ability to manage the self-care tasks required for their diabetes treatment. Each individual's priorities and life issues must be considered when the diabetes team, including the patient, sets goals and targets (112,131). The self-care goals that are set should be concrete, realistic, and measurable (132,133).
A study of adolescents (134) in a summer-school program for young people with diabetes demonstrated another important principle: Education and learning are more effective when people have an opportunity to actively address the questions and problems that actually affect them. One group of participants was randomly assigned to a social learning intervention approach to identify situations in which social pressures made it difficult for them to maintain their treatment regimen, and they rehearsed appropriate responses to these situations. The second group of adolescents underwent a more didactic, fact-oriented diabetes education program. Subsequent HbA1 values were significantly lower among the adolescents in the social skills intervention group. Variables significantly correlated with good metabolic control included self-reported adherence with a diabetes regimen and attitudes toward self-care.
Of course, providing complete didactic information that is personally connected is also important and is associated with higher patient satisfaction. Ley et al. (135) provided patients with additional physician visits that were designed to assess previous patient education and understanding and to clarify areas of misunderstanding. These patients showed significantly more satisfaction with their care than did the control group. In a review of this subject, Tabak (136) concurred that patients' satisfaction is clearly related to the amount of information available that contributes to their understanding of their condition and that they can use in caring for themselves. It is also important that the provision and acquisition of information span a reasonable time period if patients are to remember and use it. For example, a study of a diet education program given over either 3 days or 11 weeks showed that the longer program was associated with significantly greater improvements in dietary behaviors (137). The need to pace both the provision and use of information has been demonstrated by others as well (109).
Reinforcement and repetition are also important components of an educational program (108). Often, this is accomplished through the preparation of written materials for patients. Unfortunately, there is frequently a mismatch between a patient's reading skills and the level of comprehension required to understand the materials (138,139).
In one study (140), only 28% of the patients had reading skills at or above the ninth-grade level: 59% read at the fifth- to eighth-grade level and 13% had reading skills below the fifth-grade level. By contrast, an evaluation of the educational materials used with these patients showed that 87% were written at the ninth-grade level or above, 13% at the fifth- to eighth-grade level, and none below the fifth-grade level. This means that 87% of the materials were comprehensible to only 28% of the patients, 13% were understood by 87%, and none were readable by 13%!
Formulas have been developed to determine the reading level of educational materials (141,142,143,144,145). Typically, recommendations for readability suggest that educational materials be geared toward the sixth-grade reading level. However, materials should be selected based on assessments of the reading levels of the targeted populations. Helpful strategies are available for developing health education materials for low-literacy groups (146). Most word-processing programs have readability statistics functions such as the Flesch-Kincaid grade level that will determine reading level. Education materials should also be available in the primary language of the targeted population. The National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health maintains an up-to-date Web site (http://www.niddkk.nih.gov.ezp-prod1.hul.harvard.edu/health/diabetes/diabetes.htm) that provides diabetes health information, as well as reviews of diabetes information publications, in easy-to-read formats. These reviews are available in both English and Spanish. Joslin's Web site (http://www.joslin.org) is another source of useful diabetes information.
Finally, a successful education program provides patients with an opportunity to explore their attitudes toward the material being taught and to understand its implications for day-to-day living. Factors such as the patient's familial, social, and cultural environments; socioeconomic status; other health problems; and overall psychological and emotional well-being provide frames of reference from which patients approach diabetes care and their participation in it (149). The goals for diabetes education developed by the ADA acknowledge the importance of these factors (92). Anderson et al. (147) suggest a means of adapting an educational program to the patient's frame of reference through activities that stimulate an exploration of the meaning of diabetes to the patient and of the psychological adaptations required for the patient to cope with his or her concept of the disease.
Clearly, the implementation of the educational principles discussed above is most effective when the healthcare professional has received training in teaching skills (124,148,149,150,151,152).
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Unfortunately, many health professionals involved in diabetes education are not adequately trained in these skills. Such training is strongly encouraged.
When Education Should Take Place [Print Section]
Education for diabetes care is an ongoing, life-long undertaking. However, there are identifiable stages in the progression of diabetes when educational interactions are particularly recommended. The ADA identified diabetes education goals for individuals and their families at diagnosis and throughout their life (92,96).
DIAGNOSIS STAGE
Upon receiving a diagnosis of diabetes, many people are overwhelmed both by the condition itself and by the idea of all the information they think they must absorb. Therefore, people with newly diagnosed diabetes should start by learning the minimum basic skills required for survival. They should learn to maintain reasonably satisfactory management of their diabetes while carrying out essential daily activities. They should become familiar with the medical nutritional principles that they will be following and be able to choose foods in the correct amounts to follow their meal plan. Patients should be taught SMBG, and some need to learn how to inject insulin. This initial education provided at or around the time of diagnosis can occur over several days, particularly if the person is hospitalized, or in small increments over several days or weeks for those who are outpatients.
ONGOING STAGE
Once patients have mastered the essential “survival skills” of diabetes management, they should progress to a more in-depth program of ongoing diabetes education to help them become even more sufficient at self-care and therefore at preventing complications. The challenge for patients in this stage is to learn and follow a complex and demanding regimen when the benefit of preventing complications is distant (117). Key issues concern adapting diabetes self-management to work, school, social, and family settings while coping with more typical life issues and crises. Self-management education programs are available in many education centers, clinics, hospitals, and community public-health programs. These programs, such as the DO IT program at the Joslin Clinic described earlier, not only provide information, knowledge, and skills but also support patient efforts to incorporate self-care tasks into everyday life (Table 35.2).
Periodic educational updates are extremely important after patients complete the initial in-depth training to enable them to meet changing needs at different times of their lives. People can learn new ways of managing diabetes, develop skills that enable them to adapt their management program to changing needs, and familiarize themselves with new resources and advances available for diabetes care.
ONSET OF COMPLICATIONS AND OTHER MAJOR POINTS OF CHANGE
Times of major life and health changes can signal the need for revisions in diabetes management and often make supplementary educational exposure necessary. Throughout the course of a pregnancy, for example, nutritional needs will change and insulin treatment programs may become more intensified, and pregnant women must learn to make these changes properly.
Another milestone at which supplementary education is necessary is at the appearance of early symptoms or signs of a major complication. This is typically a time when patients undergo enormous anxiety and fear and often seek diabetes education to help improve their glycemic control (117). Because improved control can slow the progression of major complications (7), diabetes education programs focus on helping individuals make lifestyle changes to integrate more successful self-management practices. For example, patients can learn to make changes in their routine that, if instituted early enough, may slow down the progression of kidney dysfunction. However, even for motivated patients, lifestyle changes can be difficult and frustrating.
MAXIMIZING THE EFFICACY OF EDUCATION [Print Section]
As pointed out previously, knowledge does not equal adherence to the self-care recommendations of the treatment plan. Nonadherence is not unique to diabetes nor is it a new problem. In fact, there are low rates of adherence with recommended treatment in a variety of chronic conditions. Older studies show that only 50% of patients are compliant with long-term medication and that only 25% are compliant when the condition is asymptomatic (153). In studies specific for diabetes, 80% of those studied administered insulin in an unacceptable manner, 58% gave the wrong dose, and 75% did not follow dietary recommendations (83). Other recent studies reflect similar results (154,155,156).
Difficulty with following the therapeutic recommendations presents a substantial obstacle to the achievement of medical treatment goals, diminishes the potential benefits of the treatment regimen, and makes evaluation of treatment efficacy inaccurate (157). There is no common profile of a nonadherent patient. Age, sex, education, income, or personality type cannot predict a patient's ability to successfully self-manage diabetes. Also, patients may be nonadherent in one area and not in others (158).
The patient's ability to manage diabetes is affected by a number of factors. The first is the individual's knowledge of the self-management recommendations. With a thorough assessment of the patient's knowledge of diabetes and of self-management recommendations, diabetes education can address this barrier by correcting misconceptions, determining patient priorities, and encouraging changes in behavior by helping patients set achievable and measurable goals. Acknowledgment of the imperfections and frustrations of the treatment plan helps to prepare the patient for the inevitable setbacks (159).
The second factor that impacts self-management behaviors is the patient's beliefs about healthcare. The health-belief model looks at whether the patient believes that he or she has diabetes, that it is serious, that the treatment is beneficial, and that the barriers to care are outweighed by its benefits (160,161,162,163,164). Health beliefs can be complicated and interrelated; thus, modification of some health beliefs alone may not result in improved physiologic outcomes of diabetes care (163,165,166). For example, health beliefs about the seriousness of diabetes of 79 participants were not related to clinic attendance, dietary intake, weight loss, or fasting glucose levels but did predict reductions in body mass index after 1 year (166). In addition, the realities of a person's life and the priorities the individual holds may differ from those of the healthcare provider. For example, a mother may put more emphasis on child-care duties or family requirements than on her own healthcare requirements. This type of barrier is difficult to overcome. In some cases, therapeutic goals and recommendations may require restructuring so that they better fit the patient's priorities and achieve at least some improvement in glycemia. Other approaches may involve the help of social services and of mental health professionals.
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The characteristic coping styles of a patient may also be factors that determine adherence. Those patients who typically use a problem-focused coping style may be better able to self-manage their diabetes than those who employ a more emotion-focused approach (35,36). Denial of diabetes will not allow the patient to enter into an aggressive treatment regimen. On the other hand, those patients who tend to be obsessive/compulsive may need to be given permission to do less rather than encouraged to do more.
Another important factor is the treatment regimen itself. The greater the complexity and duration of the regimen, the more negative is its impact on treatment adherence (158). The more we ask patients to do and the longer we ask them to do it, the less likely they will be able to sustain compliance. In a study of patients with type 2 diabetes treated with oral medication, Paes et al. (156) found that patients taking one pill per day were adherent to the medication prescription on 79% of days, however, those taking two or three pills per day took medications as prescribed on only 66% and 38% of days, respectively.
The healthcare team can help modify this adherence barrier. A simplified and tailored regimen designed to meet individual lifestyle needs is more likely to be implemented successfully than is one that focuses on metabolic control alone. Clear, specific, simple, and concrete information and instructions in a diabetes education program will go far toward reducing the perceived complexity of treatment and improving the rate of adherence (108,167).
A final critical factor in the patient's ability to self-manage their diabetes is the healthcare provider. He or she can listen to the patient and modify the treatment regimen and/or alter his or her relationship with the patient as needed. In fact, the healthcare provider may be one of the most important factors influencing adherence.
The relationship between the healthcare provider and patient itself can have a positive or negative effect on compliance. Impersonality, inability to listen, and lack of warmth in the relationship between the healthcare provider and the patient can adversely affect patients' adherence to treatment (168). On the other hand, the healthcare provider's use of self-disclosure and positive nonverbal communication, such as smile, touch, and eye contact, can have a positive impact on compliance. Although time for providers is a precious commodity in today's stringent healthcare environment, taking a few minutes to check whether patients understand their self-management tasks, to address anticipated difficulties with the treatment regimen, or to answer additional questions can be quite beneficial to both the patient's self-management behaviors and to the healthcare provider/patient relationship.
In addition to working on a positive relationship with the patient, the healthcare provider can simplify the form of treatment and support the patient's efforts to manage his or her care.
ASSESSING OUTCOMES [Print Section]
“Outcome” refers to the hoped-for effect of an educational effort on diabetes management and overall quality of life for people with diabetes. Assessments of educational outcome have traditionally focused on physiologic improvements, which are the changes most easily measured. Today, these assessments attempt to determine how changes in knowledge and skills contribute to better self-care behavior and improvements in blood glucose levels, decreased complications, reduced use of healthcare services, and improved quality of life (20,24,55,147,169,170). However, as suggested earlier, healthcare professionals are recognizing that assessing outcomes by examining only the knowledge acquired and the skills learned as the sole factors involved in effecting beneficial self-care practices and metabolic control is too narrow a focus (57,70). There are many steps between an educational encounter and a medically or economically valuable outcome, with multiple factors influencing the process along the way. Knowledge and skills are only two factors that influence self-care behavior, and self-care behavior, although crucial for success, is only one component of a favorable outcome.
For example, improvements in self-care practices are unlikely to occur unless the patient is also helped to actively integrate his or her therapeutic regimen into the many facets of daily life. If the patient is expected to assume only a passive role in determining the regimen or in performing tasks and if his or her personal values and needs are ignored, no true progress is likely (78).
The ultimate purpose of assessing outcomes of educational efforts is to justify the cost and to ensure that the desired goal of improved health is reached. However, measuring the efficacy of education has been limited by the difficulty or impracticality of demonstrating a direct link between educational interaction and desired outcome while controlling for the other variables. Therefore, before beneficial outcomes can be measured, educational programs must be designed to address the multiple factors that encourage active patient participation in self-care that ultimately bring about an associated improvement in metabolic control, overall health, and quality of life (89). For example, one program made an effort to help patients develop a more accepting and positive personal response to having diabetes and to its treatment (147). Another program successfully affected self-care patterns, levels of HbA1, and emotional well-being by specifically addressing these issues (38). Joslin's DO IT program also demonstrated improvements both in the glucose control parameters and in quality-of-life measurements. Currently, therefore, assessments of outcome look beyond knowledge and skills and focus on behaviors. Identification of about three specific, desired behavioral changes during the educational encounter permits subsequent evaluation based on whether these changes have occurred.
The challenge remains to design outcome assessments that trace the further progression from educational intervention, through behavioral changes, to desired outcome in terms of measurable medical parameters, improvements in quality of life, or economic parameters. To determine the exact effect of education, however, one must control for the other variables that affect the outcome, a challenge that remains formidable. Finally, assessment of all aspects of the process of education is as important as assessing outcomes (4,171).
CONCLUSION [Print Section]
Diabetes education programs that are evolving as part of multifaceted diabetes management efforts provided by skilled healthcare teams can help patients reach higher levels of adherence, metabolic control, and satisfaction by leading to their even more active participation in self-care. With such models of excellence and the growing recognition of the cost-effectiveness of educational intervention, these educational programs should be recognized as the bargain they are rather than as an additional financial burden on society. Diabetes patient education services must become accessible to all people with diabetes as an important component of the effort to extend quality medical care to all. To continue Dr. Krall's pattern of looking forward, we trust that by the next edition of this textbook, the hoped-for universal availability of patient education will be closer to a reality.
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