Diabetes Spectrum
Volume 13 Number 4, 2000, Page 197
From Research to Practice / Lessons From the UKPDS

Educational Strategies at Diagnosis and Beyond, or Diabetes, Type 2, and What to Do!


Virginia Valentine, RN, MSN, CDE


 
In Brief

The United Kingdom Prospective Diabetes Study (UKPDS) provided much-needed data regarding the impact of diabetes and blood pressure control on patients with type 2 diabetes, but it also provided some important new opportunities for diabetes educators to share this information with patients. This article addresses the key messages from the UKPDS that diabetes educators will want to include in their curriculum for both newly diagnosed patients and "seasoned" patients to assist them with diabetes control. Strategies consistent with adult education principles for patient education regarding these messages are also addressed.


Those of us who care for people with diabetes will remember the 1990s as the decade of diabetes control studies. Echoing the lessons learned from the Diabetes Control and Complications Trial (DCCT), the United Kingdom Prospective Diabetes Study (UKPDS) held many important messages for diabetes educators working with patients with type 2 diabetes.

Some of the key messages that need to be considered for patients are:

1. Diabetes is not a character flaw. (It is not your fault, but it is your responsibility.)

2. Complications are not the consequence of diabetes. They are caused by high blood glucose and high blood pressure. (This sets the goals for control.)

3. Diabetes is a progressive disease and therefore needs ongoing, progressive education.

Diabetes educators on the diabetes health care team play an important, albeit underutilized, role in the care of patients with diabetes. The most optimistic estimate is that <30% of patients with diabetes receive any diabetes education at all. As diabetes continues to increase in the population and to consume greater and greater proportions of health care resources, the health care system will need to address this mismatch of patient need and service.

The UKPDS further underscored the opportunity to improve diabetes control and therefore outcomes for patients with diabetes. The role of diabetes educators can be an important part of achieving these improved outcomes efficiently. If diabetes education is to be delivered in a cost-effective manner, consistent messages should be developed and included in the curriculum and supported by the entire diabetes care team. The messages and educational strategies to deliver them are outlined below and summarized in Table 1.

Table 1. Messages From the UKPDS for Diabetes Educators

Message What they need to know Educational strategies
Diabetes is not a character flaw. (It is not your fault, but it is your responsibility.) 1. Pathophysiology of type 2 diabetes

2. Natural history of diabetes

Establish a plan based on patient priorities. Use teaching tools, such as the Body Apron. Empower patients to take charge of diabetes control and outcomes.
        
Complications are not the consequence of diabetes. They are caused by high blood glucose and high blood pressure. (This sets the goals for control.) 1. Goals for control, HbA1c, and blood glucose monitoring levels

2. An individualized take-action level

Set individual goals for control and take-action goals. Instruct patients on therapies employed to achieve goals, and let them know that progressive therapies may be needed to address this progressive disease.

        
Diabetes is a progressive disease and therefore needs ongoing, progressive education. 1. Diabetes is a progressive disease, and betagreen.gif (932 bytes)-cell function is lost over time regardless of therapy.

2. Insulin should be seen as another therapy option and not a failure on the part of patients.

Diabetes education is a process, not an event. Education must be paced to address self-management skill training needs as they occur.

Step 1: Help patients understand that "diabetes is not a character flaw."
People with diabetes always relate to saying that "diabetes is not a character flaw" because they have been so labeled for many years. Even with volumes of research into the genetic nature of insulin resistance as the earliest defect occurring decades before diagnosis, the health care system continues to blame the patient for this disease.

Maybe the observation that most people with type 2 diabetes are overweight has triggered the character-flaw label, or maybe the success of a minority of UKPDS patients (16% initially) in controlling their diabetes with diet and exercise has spawned the belief that all patients could do it if they tried hard enough.1 Because diabetes responds to weight loss and exercise initially in a few people, many health care professionals have made the conceptual leap to the notion that type 2 diabetes is, therefore, a failure on the part of patients to follow the diet and exercise regimens that would prevent them from developing diabetes.

Shulman et al.2 eloquently showed that nondiabetic people with a family history of diabetes had muscle glycogen synthesis rates about one-third of those for people with no family history of diabetes, regardless of whether they exercised. It is clear from their data that exercise improves muscle glycogen synthesis but that the initial defect of type 2 diabetes is not "lack of exercise."

As we continue to discover the complex metabolic processes that lead to type 2 diabetes, it is important to translate the research into ordinary language so that patients can fully understand the disease and the therapies that affect the condition. It is important to explain the development of type 2 diabetes and its progressive nature in a way that empowers rather than blames patients so that they can begin to accept treatment.

By continuing to characterize the condition as "a disease of sloth and gluttony," the health care system and society send the message to patients that everyone with type 2 diabetes could attain blood glucose control if they would only lose enough weight and exercise hard enough. At this time, evidence from the UKPDS does not support this. We will have to wait for the results from the Diabetes Prevention Program to see whether this approach will be more successful in an American trial.

Meanwhile, newly diagnosed or not-so-newly diagnosed people with type 2 diabetes need to start their journey with diabetes feeling empowered rather than downtrodden as they cope with the disease. Robert Anderson eloquently describes an approach of patient empowerment that attempts to "enhance the patients' ability to influence their own lives by helping them learn how to make informed choices about the care of their diabetes."3 Helping people understand that "type 2 diabetes is not your fault . . . but it is your responsibility" will set them on a course of empowerment so that they can manage their own condition.

This news will not make people who are new to diabetes happy, but it will arm them with an understanding of the essential nature of the disease so that they can be prepared to manage it. It also gives people permission to ask for appropriate treatment to achieve goal-range control of blood pressure and blood glucose.

What do they need to know?
Diabetes education is fundamentally based on a comprehensive assessment of patient need. Components of the educational assessment include an understanding of patient attitudes and health beliefs about diabetes and health care in general. If patients believe that their diabetes is mild—or worse, "borderline"—they will not be inclined to aggressively manage the condition.

Patients' psychological status will also affect their learning. Denial, depression, and anxiety can affect their willingness or ability to learn and participate in their care. The assessment should also include their social/cultural/religious environment, as well as an understanding of patients' literacy and willingness to participate in an educational program.

Using a learning needs assessment, diabetes educators can develop individualized educational plans to address patients' identified priorities while respecting their learning style. Using principles of adult learning, the educational process should be patient-directed, problem-oriented, and relevant to their lives.4 Additional techniques that engage learners in the disease management process include:

  1. Building patients' confidence in their abilities to do self-management and to increase self-efficacy. Provide opportunities for patients to practice skills that have a high opportunity for success. This includes setting easily achievable behavioral goals, such as "walk for 10 minutes a day" or "check your blood glucose twice a day." Use hands-on tools, such as the "body apron" available from Ideabetes. Educators can wear this apron, which has the pertinent organs sewn onto it, to help patients get a feel for how the pathophysiology of diabetes works and how the medications address these defects. (For more information about Ideabetes, a diabetes teaching tool resource, call Mary Jo Dudley at 603-749-3899 or fax to 603-659-7572.)

  2. Providing feedback and coaching regarding patients' progress and areas for improvement. Let people know that you have confidence in their ability to master the skills being taught.

  3. Pacing the diabetes education components so that patients get information at a teachable moment whenever possible. The ultimate teachable moment is the time at which people need to know or perceive that they need to know. For many people, this is at diagnosis. Sadly, instead of giving patients information, tools, and skills, many health care providers tell patients that their diabetes is "not serious" or "just a touch of sugar" and that they will be fine if they just lose a few pounds. As people learn new skills, they will remember them better if they apply the skills immediately to solve problems.

Topics that support patient understanding that diabetes is not a character flaw include an understanding of the pathophysiology of type 2 diabetes. A discussion of insulin resistance as the initial defect, the relative insulin deficiency that eventually occurs as the pancreas "poops out," and the excessive hepatic glucose production that is responsible for high fasting blood glucose levels helps patients understand the treatment strategies that will be employed to manage their condition.

Step 2: Enlighten patients with the knowledge that "complications are not the consequence of diabetes; they are caused by high blood glucose and high blood pressure."
Most patients with diabetes are empowered when given clear goals for blood glucose and blood pressure. Patients cannot be expected to assist with achievement of goals if they are not given the measurements and objectives that we hope they achieve. As many as half of the patients attending a diabetes education program did not know the goal level of blood glucose control that was expected by their health care providers.5

Too many patients do not understand what their current blood pressure is, let alone what their blood pressure goal should be. The UKPDS illustrated the importance of a goal level of <130/85 mmHg in significantly improving stroke (44% reduction), diabetes-related endpoints (24% reduction), and death related to diabetes (32% reduction).6 As many as one-third of the patients required a combination of three medications to achieve the goal-range blood pressure.

The results from the blood glucose control levels established by the UKPDS must be shared with patients. The American Diabetes Association has long promoted a goal-level glycosylated hemoglobin (HbA1c) of 7% or less and a take-action point of 8%. With the UKPDS conventional therapy group at a median HbA1c of 7.9%,7 perhaps we should rethink the number at which we suggest that patients take action.

Goals for blood glucose control to achieve these levels are not so clear now that most of the glucose monitoring equipment has changed to plasma-referenced calibration. In our experience, most educators find that the recommendation of a pre-meal blood glucose of 80–120 mg/dl avoids confusion and continues to be appropriate for most people. Most diabetes educators would agree that what is needed is a consensus on the postprandial glucose goal. Many patients learn to manage the meal-planning aspect of their diabetes management plan with postprandial monitoring.

What do they need to know?
Patients need to understand their own goals for controlling blood pressure and blood glucose. This may be staged, in that a patient with an HbA1c of 12% will not physically tolerate a blood glucose of 100 mg/dl without symptoms of hypoglycemia. It is important to explain to such a patient that an intermediate goal may be 10% on the HbA1c test, but that, eventually, we will be working toward a goal of 7%. Many patients may be more comfortable with a goal of <7%, and diabetes educators can help them determine whether such a goal is appropriate for them. Patients need to understand the DCCT and UKPDS outcomes and establish their own take-action point.

Once patients have established goals for control, they must be given the tools to achieve them. Diabetes educators must give them permission to ask for the appropriate therapies needed to achieve their goals. The UKPDS taught us that multiple therapies are required to achieve the blood pressure and blood glucose goals that deliver optimal outcomes. As patients begin to understand the goals for control, health care teams must be prepared to work collaboratively with empowered patients who will insist that they receive the multiple therapies and complex regimens needed to achieve these levels.

Step 3: Reassure patients that "diabetes is a progressive disease and therefore needs ongoing, progressive education."
Diabetes education is a process, not an event. People with diabetes must understand that they will need to approach the condition as a life-long learning process. As diabetes progresses, so should their access to increasingly comprehensive diabetes education.

Too often, patients do not understand the progressive nature of type 2 diabetes or that beta.gif (968 bytes)-cells continue to "poop out" over time. This was shown in UKPDS 16,1 with a comparison of conventional, sulfonylurea therapy, and metformin therapy in both nonobese and obese patients. The decline in beta.gif (968 bytes)-cell function was similar in all three approaches. This is important for patients to understand and underscores the need for progressive therapy to address this phenomenon.

What do they need to know?
It is important to help patients understand the progressive nature of diabetes and, even more importantly, the many tools and choices they will have to achieve goals for control along the way. Diabetes educators should explain about the progressive beta.gif (968 bytes)-cell loss so that when patients need to use insulin to achieve their goals for control, they will not see it as a failure or as further evidence of a character flaw. Just as we do not blame patients who have progressive eyesight deterioration requiring a stronger eyeglasses prescription, we need to help patients with type 2 diabetes understand the progressive nature of their disease.

One of the most important therapies is access to diabetes education and support as the disease progresses. This is not currently addressed in the health insurance reimbursement system. Medicare proposes to pay for 10 hours of education in the first year of diagnosis, but only recognizes a need for 1 hour of education each year thereafter. This does not address patients' ongoing need for assistance with new skills and therapies necessary to reach their goals. Patients should be given access to ongoing, progressive diabetes education throughout the years that they will be dealing with this difficult disease.

The Medicare plan also proposes to limit payment for education to group sessions for most people with diabetes. While this may appear to be cost-effective in urban areas, for many rural areas, it will limit access and further deny people the self-management education they need. As it stands, unless Medicare recognizes diabetes educators as providers of diabetes education, most patients will continue to have limited access to qualified diabetes educators.

Table 2. Resources for Planning Self-Management Education Programs
 
  • American Association of Diabetes Educators: A Core Curriculum for Diabetes Educators, 3rd ed. Funnell MM, Hunt C, Kulkarni K, Rubin RR, Yarborough P, Eds. Chicago, American Association of Diabetes Educators, 1998.

  • American Diabetes Association: Life With Diabetes, a Series of Teaching Outlines. Funnell MM, Arnold MS, Barr PA, Eds. Alexandria, Va., American Diabetes Association, 1997.

  • Anderson B, Funnell MM: The Art of Empowerment: Stories & Strategies for Diabetes Educators. Alexandria, Va., American Diabetes Association, 2000.

In summary, diabetes educators should plan the education process (whether individual or group) around several simple, yet important, messages that promote patient involvement, improve control, and improve outcomes. Resources for planning self-management education programs can be found in Table 2.


References
1UK Prospective Diabetes Study Group: UK Prospective Diabetes 16: Overview of 6 years' therapy of type II diabetes: a progressive disease. Diabetes 44:1249–1258, 1995

2Perseghin G, Price TB, Petersen KF, Roden M, Cline GW, Gerow K, Rothman DL, Shulman GI: Increased glucose transport-phosphorylation and muscle glycogen synthesis after exercise training in insulin-resistant subjects. N Engl J Med 335:1337–1342, 1996

3Anderson RM: Patient empowerment and the traditional medical model. Diabetes Care 18: 412–415, 1995

4Anderson RM: Educational principles and strategies. In A Core Curriculum for Diabetes Educators. Funnell MM, Hunt C, Kulkarni K, Rubin RR, Yarborough P, Eds. Chicago, American Association of Diabetes Educators, 1998, p. 5–26

5Valentine V, Boyle PJ, Slatton K: The case for case management in a population with diabetes. Disease Man 2(1–2), 1999, p. 33–36

6UK Prospective Diabetes Study Group: Tight blood pressure control and risk of macrovascular and microvascular complications in type 2 diabetes: UKPDS 38. BMJ 317: 703–713, 1998

7UK Prospective Diabetes Study Group: Intensive blood-glucose control with sulphonylureas or insulin compared with conventional treatment and risk of complications in patients with type 2 diabetes (UKPDS 33). Lancet 352:837–853, 1998


Virginia Valentine, RN, MSN, CDE, is a clinical specialist and CEO of Diabetes Network, Inc., in Albuquerque, NM.


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