Self-management education for the child with diabetes mellitus

INTRODUCTION — Diabetes is an unrelenting chronic illness requiring management by skilled professionals and daily attention and action by the child and parent/caregiver. Diabetes self-management education and support (DSMES) provides the framework and information for preparing a family to take responsibility for the child's diabetes care and facilitates the transition to self-care as the child matures. DSMES is an integral component of care for all patients with diabetes [1,2].

The curriculum, educational principles, and outcomes of DSMES are outlined in this topic review. DSMES should be closely coordinated with diabetes medical care, which is described separately. (See "Overview of the management of type 1 diabetes mellitus in children and adolescents".)

UNITED STATES NATIONAL STANDARDS — In 1986, the National Diabetes Advisory Board, the American Diabetes Association (ADA), and other professional organizations articulated initial standards of practice for diabetes education programs in the United States. In 2007, revised national standards for diabetes self-management education (DSME) were published that more fully incorporated the needs of diverse patient care settings [1,3]. Since 2011, the ADA has recommended that all people with diabetes receive DSME at diagnosis, with periodic reassessments and further educational support as needed [4,5]. In 2012, the national task force expanded the discipline to diabetes self-management education and support (DSMES), reflecting the need for ongoing maintenance of healthy behaviors [1].

Effective education engages the person with diabetes and their caregivers in informed, shared decision-making, self-care behaviors, and problem-solving. Clinicians and educators who also provide behavioral and psychosocial support are bolstering sustained behavior change and improving clinical outcomes [6].

The national standards provide information across nine content areas that represent the core body of knowledge needed by people with diabetes [1]:

●Diabetes pathophysiology and treatment options

●Healthy eating

●Physical activity

●Medication usage

●Monitoring and using patient-generated health data (eg, glucose data)

●Preventing, detecting, and treating acute and chronic complications

●Healthy coping with psychosocial issues and concerns

●Problem-solving

The content is presented in different ways depending on the person's age, literacy level, learning preference, cognitive readiness, and cultural context. (See 'Individualized curriculum' below and 'Cultural competence' below.)

The ADA and the Association of Diabetes Care & Education Specialists are responsible for evaluating and awarding national recognition to DSMES programs that meet 10 defined standards. These standards address the organizational structure of the education program, the annual planning, the credentials of the instructors, the curriculum, and the methods for assessing outcomes. Program recognition is awarded to those education centers that successfully meet the national standards. Such recognition is a prerequisite for Medicare reimbursement.

ASSESSING LEARNER READINESS — Many fine reference books, apps, online resources, videos, and pamphlets produced by pharmaceutical companies are available for people with diabetes. However, the art and science of conveying health information to individuals with diabetes requires an individualized approach, based on assessment of the individual's learning needs and readiness to learn. This is especially important for children and adolescents with diabetes and their family/caregivers.

Barriers to readiness — Not every patient is ready for every piece of information about diabetes. Many variables make learning difficult or impossible. These barriers include the child's and family/caregiver's emotional response to the diagnosis. Was the child recently diagnosed? What are their fears?

Other barriers to learner readiness include the family's previous experience with chronic illness or exposure to content from social media. For instance, do other family members have diabetes? How many "horror stories" has the child or their family heard from social media sources or others? Additional variables that can affect learning are the person's ability to read, access to a strong support system, and trust in the medical provider. Social determinants of health, such as food insecurity, housing stability, and financial barriers, can be important obstacles and should be specifically assessed and addressed.

Literacy — Health literacy, or the ability to read, understand, and implement medical directions, has been linked to glycemic control in adult patients with type 2 diabetes. In a study of 388 individuals, those with inadequate health literacy had worse glycemic control [7]. Similarly, in a study of 200 families with a child who has type 1 diabetes, a lower level of literacy and numeracy skills of the caregiver predicted worse glycemic control in the child [8]. Numeracy (the ability to effectively use math skills) is particularly important in managing diabetes. Low numeracy affects 30 percent of the general population [9]. Known as "math anxiety," this deficit may go undetected by the provider and may manifest as an apparent lack of applied problem-solving skills, especially in self-management tasks requiring proficient math skills. If the child is old enough to participate in diabetes education, assessment of the child's learning, developmental, or cognitive status is warranted to guide the approach to diabetes education.

Family and social support — Family support is critical in achieving successful outcomes for children with diabetes. The clinician and educator should strive to assure that parent(s)/caregiver have the knowledge and skills to safely care for the child [10]. Including others in the education program provides needed support for the child or adolescent. Parents, relatives, other caregivers, school personnel, and even friends can be important advocates and helpers, and they should receive the same safety-related information as that provided to the child. Schoolteachers and coaches, bus drivers, and the school nurse particularly need information about the child's diabetes. This can be accomplished through print materials and developing a diabetes care plan for the school. The American Diabetes Association (ADA) Safe at School campaign provides a variety of resources for parent(s)/caregivers. Materials may be accessed through the ADA's website [11].

Diabetes-related social media are a growing source of social support [12]. The level and type of support varies from sites promoting specific adjunctive nutritional approaches to management, insulin delivery style, or do-it-yourself technology use. Families may be reluctant to disclose their involvement in such groups to their health care providers. This may result in conflicting therapies, variable treatment outcomes, or lack of adherence to recommended therapies. Diabetes self-management education and support (DSMES) must address how social media may both impact and support diabetes care.

Cultural competence — Effective DSMES is sensitive to the learner's cultural needs and the barriers to daily living. Kleinman's model for assessing cultural impact has been adapted for diabetes (table 1) [13,14]. This tool helps the clinician or educator to identify health beliefs and cultural practices that may promote or interfere with diabetes self-care.

PROVIDING DIABETES SELF-MANAGEMENT EDUCATION AND SUPPORT — Diabetes self-management education and support (DSMES) requires a multidisciplinary team with expertise in the clinical care of diabetes, medical nutrition therapy, and teaching strategies, usually coordinated by the diabetes care and education specialist. With experience and maturity, the patient and family take an increasingly active role and shared decision-making in their educational experience [1].

Curriculum — Effective DSMES requires a series of contacts with the child or adolescent and family. Diabetes care and education specialists advocate building on so-called survival information and progressing to more advanced content [15]. Survival information includes the "Five S's": skills, supplies, simple pathophysiology, simple meal planning, and SOS (whom to call for help and when). Each of these categories includes several specific curriculum components (table 2).

Once the child and parents/caregivers have mastered these concepts, more sophisticated information may be provided. Content that includes hypoglycemia, sick-day care, nutrition (such as carbohydrate counting, label reading), exercise, and diabetes self-care decisions build on the foundational safety information. (See "Hypoglycemia in children and adolescents with type 1 diabetes mellitus" and "Management of type 1 diabetes mellitus in children during illness, procedures, school, or travel" and "Nutritional considerations in type 1 diabetes mellitus" and "Management of exercise for children and adolescents with type 1 diabetes mellitus".)

Incorporating technology — Continuous glucose monitoring (CGM) and insulin infusion pumps are increasingly used for the management of diabetes in children, and their use is often initiated soon after the diabetes is diagnosed [15]. By displaying blood glucose as a trending pattern together with rate of change rather than a single point in time, CGM devices can fundamentally change the approach to management and, in turn, improve measures of glucose control. Important outputs include the metric known as "time in range," defined as the percentage of time that glucose values are in a target range (typically 70 to 180 mg/dL, as recommended by an international consensus panel) [16]. Recommended standards have been formulated for time in range, mean glucose, coefficient of variation, and acceptable percentage of time each day that glucose levels are above or below 70 to 180 mg/dL. These metrics are increasingly used to monitor and track glycemic control, in addition to hemoglobin A1C. (See 'Health outcomes' below.)

Both CGM and insulin infusion pumps can improve the patient's understanding and self-management and can communicate digitally with care providers, thus enhancing the safety and clinical outcomes for children with diabetes [17-19]. Use of these devices is an important option for clinical care and should be included in the curriculum for children with diabetes. (See "Insulin therapy for children and adolescents with type 1 diabetes mellitus".)

Teaching strategies — Effective teaching strategies encourage active collaboration between health care providers, person with diabetes, and family. The curriculum emphasizes practical skills and explores and addresses developmental and psychosocial issues. Behavioral strategies, such as goal setting and problem-solving, are used to sustain self-management efforts [1,15].

Individualized curriculum — Effective education requires assessment of the child's and family's functional health literacy, needs, readiness, health beliefs and attitudes, and financial or physical limitations. The curriculum and educational process is then tailored to meet these needs and expectations. Reassessment and remodeling of the plan is essential, particularly when the patient is a child. For instance, the education plan for an adolescent should include the impact of puberty on diabetes care and an overall strategy to transition to self-care. (See 'Follow-up' below.)

Teachable moments — DSMES is an ongoing process. Children and families often exhibit an increased readiness to learn at key developmental or crisis times. The adolescent leaving for college or the young adult facing the onset of nephropathy are examples of people who may be ready and motivated to learn more. These teachable moments are ideal times to address further diabetes self-management and support issues.

Scare tactics — Generally, scare tactics do not work. Strategies such as showing pictures of amputations to a patient or walking them through the dialysis unit promote fear and anxiety. However, these strategies do not consistently prompt changes in behavior, particularly the long-term behavior changes that are required for optimal health [20]. Furthermore, scare tactics often extinguish hope.

Despite these considerations, families need to know the potential consequences of long-term hyperglycemia. Such information needs to be factual and should be delivered in a caring, nonthreatening manner. Diabetes education becomes an important component of motivation and adherence. Knowledgeable patients and parent(s)/caregivers at least have the tools to make decisions about making behavior change.

Time and expertise — Effective initial DSMES may require as much as four to six hours or more of contact with the patient and family over the course of several visits. Education encounters are often provided as discrete sessions separated by time to allow for better retention and application of skills taught. Consequently, many clinicians providing medical diabetes care refer patients to qualified nurses and dietitians for DSMES. Expert patient educators may be found among the ranks of certified diabetes care and education specialists (CDCES), a nationally recognized credential in the field of diabetes education and support for patients. The CDCES can be a nurse, dietitian, pharmacist, or health educator. They have additional training and experience in teaching people with diabetes. Local diabetes care and education specialists may be found through the Association of Diabetes Care & Education Specialists website.

Reimbursement — Increasingly, third-party payers and insurance companies are paying for DSMES. As of 2022, 46 states and the District of Columbia had legislation mandating coverage for diabetes education [21]. The investment in diabetes self-management education has important economic and personal returns. Studies suggest that for every dollar invested in DSMES, health care costs can be reduced by $2.49 to $3.35 [22].

Follow-up — Long-term DSMES is important to optimize lifelong self-management skills and quality of life [1,23]. This phase is particularly important for the pediatric age group because of developmental and cognitive changes over time. DSMES may include case management (reminders about follow-up care and tests and access to psychosocial supports), as well as behavioral goal setting, advanced educational curriculum, and education about any changes in diabetes management techniques (such as the use of an insulin pump and CGM). Educational updates may be necessary as diabetes technologies evolve and/or undergo upgrades.

Depending on the patient's needs and available resources, DSMES can be provided by a dedicated diabetes care and education specialist, by the patient's diabetes medical provider, or by both in a sequence of alternating visits.

OUTCOMES — The importance of diabetes self-management education and support (DSMES) to the medical management of diabetes is supported by clinical experience in a wide variety of patient groups with type 2 or type 1 diabetes mellitus. The efficacy of DSMES is further supported by studies that demonstrate improvements in psychosocial and health outcomes [1,4,5,23-27].

Behavior change — The primary outcome measure for effectiveness of DSMES is behavior change. The Association of Diabetes Care and Education Specialists has identified the following behaviors that are directly and positively affected by DSMES [28,29]:

●Being active

●Healthy eating

●Taking medication

●Monitoring

●Problem-solving

●Reducing risks

●Healthy coping

Positive behavior changes are correlated with DSMES in a variety of studies of adults with type 2 diabetes. As an example, a meta-analysis of studies concerning the effectiveness of diabetes education demonstrated improvements in dietary behaviors, blood glucose-monitoring behaviors, and other short-term behavior changes [30].

A few studies in adolescents also demonstrate that diabetes education was positively associated with increased use of primary and preventive services, decreased use of inpatient hospital services, and an increased likelihood of following treatment plans [31-33].

Health outcomes — Health outcomes are important secondary goals for DSMES:

●Hemoglobin A1c– Hemoglobin A1c is the most commonly tracked health outcome. Targets for hemoglobin A1c in children should be individualized based on treatment strategies and age and cognitive level of the child. For instance, many children using continuous glucose monitoring (CGM) may have an A1c goal of less than 7 percent. Less stringent A1c goals of <7.5 percent may be more appropriate when the risk of undetected hypoglycemia is high [4,5]. (See "Insulin therapy for children and adolescents with type 1 diabetes mellitus", section on 'Target for hemoglobin A1c'.)

Most of the data for this outcome come from studies of adults with type 2 diabetes. As an example, in a meta-analysis, diabetes education was found to decrease hemoglobin A1c by almost 1 percentage point [34]. This represents a clinically important change, given that each 1 percent reduction in A1c over 10 years is associated with approximately 20 percent reduction in risk of diabetes complications, as shown in the United Kingdom Prospective Diabetes Study [35].

●CGM metrics – As use of CGM increases, metrics such as glycemic time in range and time above and below range are being used in addition to hemoglobin A1c. (See "Insulin therapy for children and adolescents with type 1 diabetes mellitus", section on 'Continuous glucose monitoring'.)

The cost-effectiveness of DSMES was suggested in a large sample of patients with diabetes in a managed care setting. Those who received diabetes education cost the plan 5.7 percent less than members who did not participate in an education program [31]. Reviews and meta-analyses continue to emerge, strongly suggesting that the benefits of DSMES outweigh the costs [36].

A few studies describe health outcomes of DSMES in patients with type 1 diabetes [18,37]. As an example, a study of children and adolescents using CGM during a week-long residential diabetes camp showed improvements in glycemic control, as measured by time in range [37]. The campers experienced greater than 50 percent decrease in hyperglycemia at camp versus pre-camp.

Controlled outcome studies on the impact of education on children with type 1 diabetes are lacking. However, there is suggestive evidence that DSMES for children with type 1 diabetes is associated with less health care utilization and perhaps better family functioning [32,33,38].

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Diabetes mellitus in children".)

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5^th to 6^th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10^th to 12^th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient info" and the keyword(s) of interest.)

●Basics topics (see "Patient education: My child has diabetes: How will we manage? (The Basics)" and "Patient education: Managing blood sugar in children with diabetes (The Basics)" and "Patient education: Carb counting for children with diabetes (The Basics)" and "Patient education: Managing diabetes in school (The Basics)" and "Patient education: Giving your child insulin (The Basics)" and "Patient education: Checking your child's blood sugar level (The Basics)")

SUMMARY AND RECOMMENDATIONS

●Overview – Diabetes self-management education and support (DSMES) are integral components of care for all patients with diabetes. Structured DSMES improves diabetes-related self-care behaviors and health outcomes, such as hemoglobin A1c. (See 'Outcomes' above.)

●Curricular elements – DSMES incorporates the following standard curricular elements: disease process and treatment options, nutritional management, physical activity, medication use, blood glucose monitoring, prevention and detection of acute and chronic complications, and strategies to address psychosocial issues and to promote healthy behaviors and effective problem-solving. (See 'United States national standards' above.)

•The first step in DSMES is to communicate "survival information": skills, supplies, simple pathophysiology, simple meal planning, and SOS (whom to call for help and when) (table 2). (See 'Providing diabetes self-management education and support' above.)

•The DSMES curriculum then progresses to more advanced information. The approach and level at which these topics are taught are individualized, based on the person's age, functional health literacy, and cultural context. Insulin pumps and continuous glucose monitoring (CGM) are increasingly being employed in the care of children and adolescents with diabetes and should be considered in the curriculum. (See 'Teaching strategies' above.)

●Implementation – Effective DSMES requires training and experience in diabetes education and a substantial number of contact hours with the child and family. In many cases, DSMES is initiated and coordinated by an expert diabetes care and education specialist. DSMES is patient-centric; patients and families should have an active role in their educational experience and should share in decision-making and problem-solving. (See 'Time and expertise' above.)

Ongoing DSMES is important to optimize lifelong self-management skills. This is particularly important for the pediatric age group because of developmental and cognitive changes over time. (See 'Follow-up' above.)