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Couch R, Jetha M, Dryden DM, et al. Diabetes Education for Children With Type 1 Diabetes Mellitus and Their Families. Rockville (MD): Agency for Healthcare Research and Quality (US); 2008 Apr. (Evidence Reports/Technology Assessments, No. 166.)

Cover of Diabetes Education for Children With Type 1 Diabetes Mellitus and Their Families

Diabetes Education for Children With Type 1 Diabetes Mellitus and Their Families.

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Type 1 diabetes is the third most common chronic condition in children and adolescents in the United States.4 This condition affects 1 in every 400 to 600 children, and more than 13,000 children are newly diagnosed each year.1,2 In 1995, more than 140,000 children and adolescents were affected by this disorder,85 while in 2001, the prevalence was estimated to be 1.54 cases per 1000 youth in 2001.86 In 2002, the total estimated direct and indirect costs related to diabetes (type 1 and type 2) were $132 billion in the United States.2

Type 1 Diabetes Mellitus

Diabetes mellitus is the general name for a group of chronic metabolic diseases characterized by high blood glucose levels that result from defects in insulin secretion and/or action. The two main forms of diabetes are insulin-dependent diabetes mellitus (IDDM) or type 1 diabetes and noninsulin-dependent or type 2 diabetes. Type 2 diabetes is more commonly diagnosed in adulthood and is characterized by the body's inability to use insulin properly. Although type 1 diabetes can be diagnosed in adulthood, it usually develops and is diagnosed in childhood and adolescence.

Type 1 diabetes occurs when the beta cells of the pancreatic islets of Langerhans, which are responsible for insulin production, are progressively destroyed by the immune system. The body's ability to produce insulin becomes progressively impaired until eventually no insulin is produced. The insulin deficiency results in decreased insulin utilization and increased hepatic glucose production leading to hyperglycemia. In addition, there is an increased breakdown of adipose tissue leading to ketonemia and eventual diabetic ketoacidosis (DKA) that, if left untreated, is potentially fatal.87

Acute Complications of Type 1 Diabetes

Type 1 diabetes and its treatment has two major acute complications: DKA and hypoglycemia. DKA is a metabolic state resulting from acute hyperglycemia. DKA has a mortality rate of 0.5 percent, mostly due to cerebral edema, the most frequent diabetes-related cause of death. DKA is most common at presentation, occurring in an average of 40 percent (15 to 83 percent in population studies) of children presenting with diabetes. In established diabetes, the rate is 1 to 8 percent per year. Risk factors include infection, insulin omission, and equipment malfunction. DKA is treated with immediate hospitalization, insulin replacement, and rehydration.

Hypoglycemia is a complication of insulin treatment. Symptoms caused by a fall in blood glucose include shakiness and emotional instability. In severe cases, there may be seizures or unconsciousness. There has been concern about possible brain dysfunction due to prolonged or repeated hypoglycemic episodes; however, there is limited evidence of permanent cognitive sequelae and they are considered minor.88,89 The prevalence rates for this complication vary due to potential under-reporting of minor episodes. Studies looking at the prevalence of severe hypoglycemia in children and adolescents report a range of 4 to 86 episodes per 100 patient years.3,90 Hypoglycemia is most frequent at night, is most serious in younger children due to their relatively higher rate of glucose utilization, and is a possible cause of death. It can be avoided with education about symptoms, careful meal planning, and nighttime glucose monitoring.

Chronic Complications

Chronic complications associated with type 1 diabetes include microvascular complications such as retinopathy, nephropathy, and neuropathy, and macrovascular complications. Macrovascular complications include circulatory and cardiovascular events such as stroke and myocardial infarction, which are rare in children and adolescents; however, risk factors such as hypertension, smoking and dislipidemia should be managed. Chronic complications have been linked to poor glycemic control and the duration of the disease.91 Many chronic complications are rare in childhood, but management of diabetes in childhood has implications for later development of complications. Donaghue et al.92 found that although the survival-free period of retinopathy and microalbinuria was significantly longer for those diagnosed before 5 years of age compared with those diagnosed later, the risk of clinical retinopathy increased by 28 percent for every prepubertal year of duration and by 36 percent for every post-pubertal year of duration. However, there has been a declining incidence of some of the longterm complications over recent decades,93,94 likely due to improvements in diabetes management.

Diabetes Management and Education

Type 1 diabetes is managed by a combination of insulin replacement and balancing of diet and exercise in order to maintain glycemic control and prevent the occurrence of complications. Glycemic control, which is directly linked to complication rates,91 is monitored by the measurement of glycosylated hemoglobin (HbA1c), which reflects the mean blood glucose level over the previous 2 to 3 months. Lowering HbA1c has been associated with a reduction of microvascular and neuropathic complications of diabetes.3

It is generally accepted that in order to effectively manage diabetes, education about components of management such as blood glucose monitoring, insulin replacement, diet, exercise, and problem solving strategies must be delivered to the patient and family. Education seems necessary both at diagnosis, where there is usually no knowledge base and patient and family are given the basic skills for controlling the disease,4 and throughout the patient's lifetime, with ongoing attention to self-management skills, screening and prevention of complications, and new developments in these areas. Since management of diabetes requires lifestyle changes, most clinicians feel it is important for education to be delivered to the whole family. The following report attempts to determine whether there is evidence to support the general belief that diabetes education is necessary and/or beneficial.

Current Standards

The American Diabetes Association (ADA) has published standards regarding diabetes management in children95 and self-management education.96 Key points are that management should involve a physician-coordinated team of professionals and should recognize the interaction between parent and family, physician, and other members of the health care team. Individual factors (age, schedule, culture, family dynamics, developmental stage, and physiologic differences related to maturity) should be considered when developing a treatment plan. The goal for glycemic control is to self-monitor and to achieve an HbA1c measure as close to normal as possible in the absence of hypoglycemia. Severe or frequent hypoglycemia indicates the need to modify treatment regimens, including setting higher glycemic goals. Since hypoglycemia is more of a concern in children, the optimum glycemic goals for children are set according to age and are higher in younger children.

Medical nutrition therapy, the nutrition education and counseling that is intended to help people with diabetes achieve optimal blood glucose control, should be individualized. Education can help people to balance and adjust their food choices according to their activity and insulin levels, avoid and treat hyperglycemia and hypoglycemia, and adjust meal patterns when feeling ill.97 The amounts and types of carbohydrates in food affect blood glucose level and need monitoring; however, a low-carbohydrate diet is not recommended. The recommended diet for diabetics is now closer to the recommended guidelines for all Americans, thereby eliminating the need to use special diabetic foods.97 In children, medical nutrition therapy should be provided at diagnosis and reviewed annually to ensure normal growth.

Diabetes self-management education (DSME) is considered an integral component of care and is recommended at diagnosis and thereafter. DSME helps people with diabetes initiate effective self-care when first diagnosed and also helps people maintain effective self-management as diabetes presents new challenges and as treatment advances become available. In children, education must take into account that younger children will require adult supervision. As children mature, it is expected that they take on more responsibility for their own monitoring and care. An issue in this transition is adherence to insulin and diet regimens.

DSME helps patients optimize metabolic control, prevent and/or manage complications, and maximize their quality of life in a cost effective manner. It is reimbursed as part of the Medicare program.96

Intensive Diabetes Management and DCCT

The Diabetes Control and Complications Trial (DCCT) demonstrated that intensive therapy was highly beneficial in decreasing the incidence of complications in type 1 diabetes.98 Intensive therapy included the administration of insulin by injection or pump 3 or more times daily. The dosage was adjusted in accordance with the results of self-monitoring of blood glucose at least 4 times per day, dietary intake, and anticipated exercise. Specific blood glucose concentration goals were set and patients visited the study center each month and were in telephone contact to review and adjust regimens. This was in contrast to conventional treatment, which had one or two daily injections of insulin, daily self-monitoring of urine or blood glucose, education about diet and exercise, and did not usually include daily adjustments in insulin dosage. Goals included absence of symptoms and maintenance of normal growth and development, but not specific blood glucose targets.

Followup demonstrated that the benefit of intensive therapy in decreasing complications was maintained. This trial established a new philosophy of treatment in using a multidisciplinary team approach and using adjustments based on data monitored by the patient. It is of interest to know if families can be educated to use this intensive style of management outside the trial setting.

Educational Interventions

Educational interventions can take many forms. Didactic education, computer games, board games, cognitive behavioral therapy, and telephone calls are some of the possible methods of delivery. The education may be directed at the patient alone, parent alone, the whole family, and even peers. Education delivered at diagnosis is different than the education on self-management that occurs throughout the patient's lifetime. At diagnosis, the skills needed to manage the disease are first introduced. Later, education may be needed to adjust to the ongoing challenges of developmental changes with a chronic disease, and to keep apprised of new treatments. The aim of the educational interventions may be, among other things, to improve metabolic control, reduce complications, gain skills in self-management, or improve quality of life.

Reviews of educational and psychosocial interventions for adults with diabetes have been conducted and have shown beneficial effects.4 Those reviews that have examined programs targeted to meet the particular needs of children have primarily focused on the adolescent population.4,99 The systematic review by Grey et al. (2000)21 appears to be the only one that has assessed diabetes education for both children and adolescents.21 The review by Gage et al. (2004)4 found that most interventions could be categorized into programs focusing on knowledge/skills, psychosocial issues, and behavior/self-management. They found that there were modest improvements across outcomes such as behavior and metabolic control but that there was little evidence regarding their long-term effectiveness. They also reported that hospital inpatient education at diagnosis was not significantly more effective than home based education and suggested that education may be most beneficial in patients whose metabolic control is poor. The review on psychological interventions by Winkley et al. (2006)100 found that psychological treatments such as supportive or counseling therapy, cognitive behavior therapy, psychoanalytically informed therapies, and family systems therapy improved glycemic control in children and adolescents with diabetes but had no effect in adults. The review by Grey et al.,21 which examined education in children specifically, concluded that educational interventions were useful in improving diabetes knowledge, but they were not consistently useful in improving metabolic control. They also reported that psychosocial interventions such as coping skills training helped adolescents to improve adjustment and metabolic control, and that family interventions may be helpful in reducing parent-child conflict about diabetes management.

Objective of this Evidence Report

The objective of this review is to synthesize the evidence examining the effectiveness of diabetes education on day-to-day management of diabetes as it relates to metabolic control, health care utilization, complications, knowledge about management, and its effect on psychosocial issues and metabolic control, and intensive diabetes management.

The Key Questions

The key questions for this Task Order are:


What is the evidence that diabetes education on day-to-day management of diabetes improves metabolic control (as determined by glycosylated hemoglobin76 [HbA1c] values, numbers of diabetes-related hospitalizations, frequency of diabetic ketoacidosis [DKA] and numbers of episodes of hypoglycemia)?


What is the evidence that medical nutrition therapy education in day-to-day management of diabetes improves HbA1c values and results in less variability in blood glucose levels?


What is the evidence that diabetes education results in improved long-term management of diabetes, including better adherence to recommendations made in clinic and decreased hospitalizations and emergency room visits for diabetes-related complications?


What is the evidence that diabetes education programs improve knowledge about diabetes management?


What is the evidence that this knowledge increases the child's self-confidence in his or her ability to handle the disease and has a positive impact on the child's quality of life (QOL) and other psychosocial issues (e.g., school absences, school performance, adherence to a medical regimen)?


What is the evidence that this knowledge improves long-term metabolic control (i.e., decreases or prevents diabetes-related complications), as shown in the Diabetes Control and Complications Trial (DCCT) (as measured by retinal, renal, cardiovascular and neurological evaluations), in children of families who receive these diabetes education or medical nutrition therapy program services compared to children of families who do not receive these services?


What is the evidence that training in intensive diabetes management (consistent with DCCT, including blood glucose monitoring at least 4 times a day, 3 or more daily insulin injections or use of an insulin pump and education on when and how to adjust insulin doses) conducted in the practitioner setting yields:


Improved metabolic control, (as determined by HbA1c values, numbers of diabetes-related hospitalizations, frequency of DKA and numbers of episodes of hypoglycemia)?


A decrease in or prevention of diabetes-related complications (as measured by retinal, renal, cardiovascular and neurological evaluations), as demonstrated by DCCT?

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