This is the first in a series of 3 articles highlighting the 2024 ADCES practice paper, “The Role of the Diabetes Care and Education Specialist in Pediatric Diabetes Regardless of Etiology.”
Although type 1 diabetes can be diagnosed at any age, approximately 50% of the cases are diagnosed during childhood and adolescents. The incidence of diabetes has risen over the last few years (Centers for Disease Control and Prevention 2020), and the diabetes care and education specialist (DCES) plays a pivotal role in educating children and adolescents with diabetes and their families.
When an individual is first diagnosed, which can be in a hospital or an outpatient clinic, it is a priority to educate the caregivers on the etiology of the disease. Many parents feel guilt, and it is important to assure them that there is a genetic basis for the development of diabetes and that lifestyle choices, such as eating behaviors, have not caused this condition.
The emphasis of education should be an understanding of the disease and treatment strategies. Children and adolescents with diabetes and their families should appreciate that almost all things are possible with this diagnosis as long as they engage in the treatments and take care of their glucose values. The exception would be serving in the military due to the potential lack of insulin availability in combat situations.
Based on data from the TID Diabetes Exchange from 2016 to 2018, managing diabetes to achieve optimal targets continues to prove illusive (Foster et al 2019). Fewer than 17% of children and adolescents achieved the ISPAD A1C target of <7.5%. There is evidence that insulin pumps and sensors have improved A1C results in this group. The use of automated insulin delivery systems is furthering progress in achieving more time in range and improved A1C values, which remains the gold standard. However, regardless of the technology utilized, a thorough understanding of the disease and treatment options is critical to the management of the disease and positive outcomes.
The role of the DCES is providing the components of self-care behaviors as outlined by the Association of Diabetes Care and Education Specialists. The challenge is that education is not just for the individual but extends to the family, daycare, and school systems. Although each component may not be integrated into every situation, recognizing symptoms of hypoglycemia and hyperglycemia in children and adolescents and understanding the treatments is important for anyone in contact with these individuals.
Another aspect of this population is the drastic change in insulin needs that can come with growth and development. Assuring the family that the diabetes team is always there to support them when they see changing insulin needs is reassuring and will result in optimal outcomes.
Utilization of diabetes technologies such as pumps and sensor have become the standards of care for children and adolescents with type 1 diabetes (American Diabetes Association 2024). The DCES can play a pivotal role in educating families about the options, getting them started on the devices, and following up to ensure a complete understanding of expectations and problem-solving issues that may arise, such as challenges with skin integrity.
The medical management plan is important for the school as directed by the health care provider, and families need to make sure a 504 or IEP plan is completed to ensure safety for the child or adolescent with type 1 diabetes. The DCES can support the completion of these documents by working with families, health care providers, and the school system.
As technologies continue to be part of the treatment of type 1 diabetes, including sensors and insulin pumps controlled by phones, connectivity to devices must be allowed during school. It is also important that distractions from alarms and interruptions by concerned parents are minimized so that the child receives important data but is not a disturbance to others. This can be accomplished by setting higher and lower alarm targets during school hours and having contracts with parents on when it is and is not appropriate for parental intervention during school. As a DCES, working with families to achieve these goals is important for success in school.
Traveling with sports or other school teams or on field trips has the potential to be challenging. The adult in charge of these excursions should be well versed in the aspects that require their oversight and understanding, such as what the student is able to handle on their own, how to treat hypoglycemia, and how to recognize a diabetes emergency requiring medical help. The DCES can provide educational resources for school staff and be a contact when questions arise.
Diabetes-focused camps help young people with diabetes feel less isolated. Multiple studies on the impact of camps have demonstrated improved diabetes acceptance (Fegan-Bohm et al 2016). Meeting others with type 1 diabetes can be a powerful experience, and many campers come back year after year to see their camp friends and counselors. The Diabetes Education and Camping Association provides a list of camps worldwide for families to consider (diabetescamps.org).
Another challenge with young people who have type 1 diabetes is the transition from pediatric to adult care (Buscher et al 2017). This is a time of change, leaving home to go to college or work and becoming even more independent from parents or guardians. The DCES can help to prepare individuals for this transition and discuss some situations that may be more common in this age group, such as temptations to drink alcohol, smoke, or take illegal drugs.
The importance of excellent glucose management prior to pregnancy should also be discussed as young adults consider sexual activity and the potential for a pregnancy. It is important for individuals to understand the added impact their choices can make on their diabetes management, and these situations should be reviewed prior to leaving the pediatric practice. It is also important for them to know how they will obtain diabetes supplies and where their medical management team will be.
Working with children with type 1 diabetes and their families is an honor. It is a day-today challenge for the individual, the family, and the DCES, who can be there to educate, help problem-solve, and provide support throughout life’s transitions.
Carla Cox, PhD, RDN, CDCES, FADCES, is with Mountain Vista Medicine in South Jordan, UT.
American Diabetes Association. Standards of Care in Diabetes – 2024. Diabetes Care. 2024;47(1):S133.
Buschur EO, Glick B, Kamboj MK. Transition of care for patients with type 1 diabetes mellitus from pediatric to adult health care systems. Transl Pediatr. 2017;6(4):373-382.
Centers for Disease Control and Prevention. Rates of new diagnosed cases of type 1 and type 2 diabetes continue to rise among children, teens. Updated February 11, 2020. Accessed December 16, 2022. https://www.cdc.gov/diabetes/research/reports/children-diabetes-rates-rise.html
Fegan-Bohm K, Weiddberg-Benchell J, DeSalvo D et al. Camp for youth with type 1 diabetes. Curr Diab Rep. 2016;16(8):68. doi:10.1007/s11892-016-0759-x
Foster N, Beck R, Miller K, et al. State of type 1 diabetes and outcomes from the TID exchange in 2016-2018. Diabetes Technol Ther. 2019;21(2):66-72.