Diabetes self-management education and support: a lesson from the past

by J. F. Raposo, Portugal

Joao Filipe RAPOSO, MD, PhD
APDP-Diabetes Portugal
Nova Medical School

Diabetes is a chronic condition, which implies that there should be direct patient involvement in the management of the disease. This process involves a continuous cycle of lifestyle (diet and physical activity) adaptations associated with a complex treatment regimen and monitoring system. Diabetes has a long and diverse natural history that may result in acute and chronic complications, which increase the morbidity and mortality risk. Health care providers are mainly trained to work in structures equipped to deal with acute care situations, where patients require immediate attention since their life may be at risk. This system results in using inadequate models of education that are based on a classic directive approach (health care provider to patient), where judgment and failure are anticipated, and guilt and blame frequent. Most educational models are also based on information strategies to transmit knowledge and skills; however, behaviors are not addressed. Low treatment adherence is recognized by the World Health Organization (WHO) as a major health issue that is particularly relevant in chronic conditions. The WHO defines therapeutic patient education as an additional tool to address these health issues, whereby the educational activities should be performed by trained multidisciplinary teams and the direct involvement of the patients to prevent diabetic complications and improve the quality of life. In this process, the integration of patients’ values and objectives are fundamental to achieve success in negotiating effective individual solutions.

The first use of insulin for diabetes treatment in 1922 represented a historical landmark in medicine. Children and youngsters condemned to a prolonged wasting death were suddenly saved; a new era had begun. In reality, much was already known about the physiological processes involved in diabetes, and many of the concepts related to nutrition had already been discussed at the turn of the 20th century. At that time, the unmet needs were a cure for diabetes or a pharmacological treatment to control it; insulin was the miracle drug that addressed the second unmet need.1 Two decades later, the mortality rate associated with acute diabetic complications had decreased sharply, but the mortality and morbidity due to cardiovascular and renal causes had increased (24.6% in 1922 to 70.1% in 1949),2 meaning that these causes, together with retinopathy and neuropathy, represented the main cause of death and incapacity for people with diabetes.3 In an era of narrow views on evidence-based critical health-related outcomes, this finding could have been seen as a side effect of insulin and not as a spurious association.4

The natural history of diabetes was changed with the introduction of insulin, and chronic diabetic complications are now our main concern. A cure for diabetes is still not available, but the pharmacological treatment has evolved greatly. Now, we know that there are different types of diabetes, and, for each type, we have different treatment options. We also know that an early intensive treatment targeted at glycemic control is associated with better outcomes.5,6 Laboratory (eg, HbA1c and microalbuminuria)7,8 and technological developments, such as the introduction of self-monitoring,9 have provided better indicators for diabetes management. The introduction of screening for complications has enabled an earlier diagnosis of diabetes (eg, diabetic retinopathy screening10), and the introduction of more effective treatments for diabetes complications, the use of multidisciplinary teams, and the use of an integrated approach to the care of people with diabetes11 have improved health-related outcomes. Still, the stakeholders— health care providers, researchers, and health policy makers— feel that there are improvements to be made. Diabetes prevalence is increasing in all countries, and the increasing costs are menacing the sustainability of the health care systems. However, with the involvement of these stakeholders, are we not forgetting a key element? What are the perspectives of the people with diabetes?

Diabetes was probably the first example of active patient involvement in disease management. With the advent of insulin, people had, in their hands, a tool that could save them, potentially harm them, or even kill them. By today’s standards, the self-injection of insulin would probably represent an unacceptable risk to be transferred to the patient, which was only possible through a process called “patient education” that evolved over time to “patient empowerment” and “patient activation/ engagement” in a “patient-centered” process of care.

Patient education

Traditionally, societies have had two differentiated educational settings: knowledge-oriented (school/university-based) and skills-oriented (craft- or guild-based). In a formal context,12 education is the process that society defines to incorporate adequate knowledge, skills, and attitudes in its citizens. As defined, it is acceptable to have a wide variation in its implementation due to appropriate adaptations in political, cultural, and economic contexts. As a final objective, education promotes a positive participation or engagement of its citizens in their society. The basic conceptual model is usually that the transmission of knowledge precedes the skills acquisitions, which will eventually lead to better attitudes.

While it is widely used throughout the world, patient education and practice have different meanings in different countries and settings. A working group of the World Health Organization in Europe (WHO-E) recognized these differences and provided an operational definition13 of therapeutic patient education as the “educational activities essential to the management of pathological conditions, managed by health care providers duly trained in the field of education, designed to help a patient (or a group of patients and their families) to manage their treatment and prevent avoidable complications, while keeping or improving their quality of life.” According to this group “what was specific about it, was that therapeutic patient education produces a therapeutic effect additional to that produced by all other interventions (eg, pharmacological, physical therapy).” For the correct implementation of therapeutic patient education, we should recognize a minimum set of characteristics. Health care providers should be trained in promoting adequate self-management by the patients and highlighting the most relevant outcomes for the patients, ie, delaying complications while maintaining or improving quality of life.

Early on in the history of diabetes treatment,14 it was recognized that failure to attain normoglycemia was mostly ascribed to inadequate cooperation by the patients because they did not adhere satisfactorily to their prescribed regimen. At that time, a special focus was made on the patient’s initial reaction to the diagnosis, which is still discussed as the principle of individualization. Another aspect relevant to treatment nonadherence was the recognition that people had a difficult time giving up the pleasure of eating certain foods and the natural rebellion reaction of an average person to a perceived limitation in their freedom. Health care providers share the responsibility for the poor results, and they are considered responsible for failing to recognize these natural coping processes. Patients needed to be supported, not blamed.

Patients’ rights and responsibilities

At the turn of the 21st century, it was recognized that all of these processes should be integrated into what societies have defined as a citizen’s involvement in all policies. Specifically, in health, there are a set of rights and duties that should be considered: (i) we are all responsible for doing as much as we can to keep ourselves healthy, which includes maintaining a healthy diet, performing regular exercise, and not smoking; and (ii) we have the right to expect our health care systems to help us stay healthy and provide appropriate care when we are suffering from chronic diseases; and (iii) we are responsible for doing everything we can to make our health care systems work for us.15 To achieve this involvement, health care systems have mainly relied on public campaigns or individual approaches based on information and knowledge transmission.

A good example of the dissociation between knowledge and behavior comes from the UK,16 where a significant proportion of the population has a good knowledge of healthy eating (more than 50% of a low-income population associated healthy eating with eating more fruits, more vegetables, and less fat) and the need for increasing physical activity; however, with identified barriers to behavioral changes, more than 61.7% of the adult population are overweight or obese.17

Clearly, we have been missing a major step to achieving success: the focus should be on behavior and not necessarily on pushing more information. However, for this, we need the active participation of the patients, the so-called “expert patients,” ie, the people who have the “confidence, skills, information and knowledge to play a central role in the management of life with chronic diseases.”18 This concept has evolved from an individual patient perspective to a collective patient identity19 that has become more relevant in defining health care processes, outcomes, governance, and research. In addition, this concept has evolved to increase the relevance of patient associations in a participative society.20

Choices and decisions

In the process of care, patients usually have the final decision. The concept of compliance is frequently used as a synonym for adherence, which usually refers to the extent of conformity with the recommendations for day-to-day treatment by health care providers concerning the timing, dosage, and frequency.21 Health care providers need to be trained in adherence. Treatment adherence is low in patients with chronic conditions, such as diabetes, and this poor treatment adherence is associated with increased costs and poorer health outcomes because it compromises treatment effectiveness. The WHO has considered poor treatment adherence a worldwide problem of striking magnitude because its impact increases as the burden of chronic diseases grows worldwide.22

We need to understand the processes involved in people’s choices. Classically, these processes were thought to be the result of knowledge, fear, and desire.23 For each specific situation (eg, a disease), each person has a certain knowledge acquired through different environmental interactions which elicit a personal construct that balances the decisions between the fear of deleterious consequences and the rewards. This balance is also subject to considerable individual variation since the consequences and rewards in chronic conditions are delayed in time, making the immediate perceived value of an objectively small cost much greater than a large long-term benefit24—the “discount rate.” This perspective also varies considerably depending on the end-user (eg, individual, policy-maker, payer),25 where individual discount rates are much higher than the collective perspective approach.

Another relevant aspect in the construction of choices is the assessment of individual needs. One major driver of human behavior is the fulfillment of our perceived needs. In a simplified approach,26 we can consider that every person has a hierarchy of needs and specific actions are devoted to addressing these needs. If a person foresees a threat to a fundamental need, a negative rejection reaction can be anticipated (eg, food counseling for diabetes). This model implies the existence of an almost infinite number of possible variations in people’s choices when dealing with apparently identical situations. Therefore, while it is possible to define general rules for implementing patient education programs, no “one-size fits all” solution is possible since patient-tailored interventions are required, which increases the need for health care providers to develop quality skills in health care education.

In addition to identifying knowledge gaps, personal values, desires, and fears, health care providers should also recognize the individual barriers to change or adherence.27 These barriers include social and economic factors, the health care team/system, the disease characteristics, treatments, and patient-related factors,22 such as depressive vs stress-coping mechanisms.28 Solving the problems related to each of these factors is necessary to improve treatment adherence, meaning that it is fundamental to identify the best intervention that also includes the patient and the patient’s perspective. According to the previously mentioned report on food and physical activity in the UK,16 if identified barriers, such as the association of healthy food with a perceived increased price or a fear of missing tasty foods, are not addressed with a targeted strategy, then the future results cannot be expected to improve.

Concept integration

Education-based interventions have been implemented at all levels of care, and they are usually based on a multidisciplinary approach with a goal of better treatment adherence. As previously mentioned, these multidisciplinary teams should have specific training to develop education and communication skills. The presence of an information support system and a strong monitoring and assessment tool are desirable in education- based interventions.

The Diabetes Prevention Program29 has defined the fundamental elements for achieving a 7% weight loss and at least 150 minutes/week of physical activity for the primary prevention of diabetes. The program had a structured core curriculum that was based on individual case managers, and there was frequent contact with the participants. Behavioral self-management strategies, flexible maintenance interventions with group and individual approaches, motivational campaigns, and “restart” strategies were key elements for the success of the program. Individualization was advisable, and health care providers had access to a “toolbox” of adherence strategies. A continuous evaluation was implemented through training, feedback, and clinical support. These strategies were similar to the ones used in the Finnish Diabetes Prevention Study.30

The implementation of a secondary prevention program in diabetes in a low-income neighborhood in Los Angeles was a milestone in diabetes.31 It was possible to demonstrate in 1972 that the increased involvement of patients in their process of care, which was associated with specific access to health care providers, namely using telephone calls, dramatically decreased the number of hospitalizations associated with acute metabolic decompensation.

Education is considered fundamental in tertiary prevention programs for diabetes, which should be associated with pharmacological and rehabilitation treatment32 for all major chronic diabetes complications. As discussed previously, therapeutic patient education should provide an additional therapeutic effect to the other treatment modalities.13 Ideally, by increasing the effectiveness of treatment adherence, interventions may have a far greater impact on the health of the population than any improvement in specific medical treatments.33 This effect has been demonstrated for short-term interventions, but it has provided conflicting results in long-term interventions, which can happen during poorer maintenance-phase interventions. A systematic review of the literature has demonstrated the usefulness, efficacy, and efficiency of the introduction of structured programs for diabetes management.34

Improving treatment adherence usually involves increased surveillance, which has typically been done by increasing the frequency of face-to-face contacts, then by making phone calls, and is now incorporating digital/virtual technology assisted processes. The incorporation of information technologies can help support patient decisions. Health-related internet searches by the patients have been correlated with better health-related outcomes.35 Sharing health decisions by transferring automated reports between patients and health care providers can overcome the traditional clinical inertia.36 The use of technology has made it possible for other health care providers, such as community pharmacists,37 to intervene and integrate their actions in the process of care. Virtual health networking is finally a reality, and it allows health care providers, patients, and other professionals in the community to intervene in patient care. The benefits of these networks have produced divergent results in various studies, but a clinical trial is now underway to study the effects of virtual health networking.38

The dilemma is to find an adequate balance between public and private individual health data. Our “expert patients”18 will have a more definitive say in this decision, again balancing gains, losses, fears, and rewards.23 Another topic of discussion is the concept of improving patient safety by incorporating the information provided from the patient’s perspective.39

Structure and process indicators have been the traditional measures used to determine the performance of health care systems. The introduction of health-related outcomes became necessary, but, for most cases, it is based on crude outcomes (eg, mortality, hospital infections). While important, these crude outcomes may not reflect the relevant outcomes for the patients. Patient-reported outcomes, a new concept that encompasses the creation of different indicators for symptomatic and other health-related quality of life dimensions, have been developed.40 This perspective is becoming more important as the role of patients in health governance is potentially increasing, and new models for financing health care systems are being discussed.41 Due to the diversity of the long natural history and heterogeneity of diabetes complications, it has been difficult to create a set of patient-reported outcomes; however, outcome segmentation (eg, patient-reported outcomes for neuropathy) has helped.42


Diabetes is the archetype of a complex chronic condition where patient intervention is fundamental. It requires lifestyle changes and continuous adaptations, complex pharmacological treatments that depend on variable algorithms, and an integration of these activities in personal, family, and social interactions. Face-to-face contact with health care teams represents less than 0.01% of the lifetime of people with diabetes. Therefore, education was recognized as the linking tool between health care providers and people with diabetes for better health-related outcomes. Pharmacological and technological innovations apparently introduced the need for fewer interventions from the patients in their self-management; however, the reality is the opposite. All clinical trials of new drugs or technologies are performed in addition to a “conventional” education process, which is seldom present in real-life conditions. The disparity of health-related outcomes between randomized clinical trials and real-life data is probably not only due to the more heterogeneous population, but also to the impossibility of introducing the educational process with the same characteristics in clinical practice.

For effective patient education, multidisciplinary teams should be trained and given adequate conditions to implement these procedures in the process of care. Structured curricula are fundamental to guarantee the objectives and equal access of all people to identical quality care. Active involvement and engagement of patients are only possible if we, the health care providers, change our education concept from a classic perspective (teacher to student) to a shared model that assumes sharing the risks, successes, and failures. This shared model also involves recognizing the patients’ values, desires, fears, barriers, and needs in the proposed individualized therapeutic solution for specific outcomes and objectives.

This process is continuous and evolving, with forward and backward steps that are not only dependent on personality, genetics, and metabolic factors, which are not yet fully understood, but also comprised of individual choices that are the result of an infinite number of interactions between an individual and his/her environment (family, community, society). Low treatment adherence is recognized as a global health issue; therefore, health care providers should be able to assess this dynamic process continuously.

Diabetes education has proven to be effective for primary, secondary, and tertiary preventions. It should be transversal to the multidisciplinary team where integration is the key factor for success. Technology, if duly integrated into the process of care and accepted by the involved participants, can act as a facilitating tool with proven benefits. Support from peers and other health care providers is becoming more relevant with an increasingly easier access to health information. Health care systems must evolve to meet new challenges. We are progressing from a patient-centered approach where the health care systems’ stakeholders knew what was best for the patients and acted on their behalf to a citizen-centered approach where citizens, communities, and patient organizations will have a more decisive role in their choices on the definition of relevant health-related outcomes, treatment options, and in health research, system policies, and governance. This model aims to provide better health-related outcomes in a more efficient health care system. Multidisciplinary health care teams will be able to act in close relationship with other community resources to achieve this endeavor. We will be a healthier society with informed and active citizens who are deeply involved in their health and disease management.■

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Keywords: cardiovascular outcomes; diabetes; glucose-lowering therapy; glycemic control