Pitfalls in pediatric type 1 diabetes care

Reviewed by Lynne L Levitsky, MD, FAAP

Type 1 diabetes accounts for over 90% of diabetes in children and adolescents worldwide, and it is estimated that about 78,000 young persons are diagnosed annually.^1,2 In the United States, it is estimated that up to 3 million children have T1D, and about 18,000 are newly diagnosed each year.²

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The rates are climbing. A recently published study found a nearly 60% increase in the number of US children living with T1D, with a rise from just under 1.5 cases per 1,000 children in 2002 to 2.3 per 1,000 children in 2013.³

These children will require lifelong management of their diabetes, starting at the age of diagnosis through their life span. Insulin therapy that matches diet and exercise will be the mainstay of these children’s lives during childhood, into adolescence, and through their adult years.^4,5 Therefore, educating children at the onset of disease on what they need to do to maintain good glucose levels lays the foundation on which self-management can increasingly evolve as they age. Table 1 lists recommendations on diabetes education in children and adolescents by the International Society for Pediatric and Adolescent Diabetes (ISPAD).⁴

Parents, school nursing and administration staffs, and healthcare providers all are needed guides in helping these children learn how to manage diabetes so they can participate in daily life no differently than other children.

Pediatricians contribute to this guidance by working as a team with endocrinologists and diabetologists who often are the primary providers of diabetes care. Pediatricians may also be the primary care providers in some communities that lack access to an endocrinologist or diabetologist. In either role, pediatricians are integral to the overall health of their patients, which includes educating parents about issues relevant to managing T1D in their child.

“The most important thing for pediatricians to recognize,” says Lynne L. Levitsky, MD, FAAP, associate professor of pediatrics, Harvard Medical School, Massachusetts General Hospital, Boston, “is their share relationship with endocrinologists and diabetologists to ensure shared management of these children.” A shared approach, she says, includes the exchange of information between specialists to ensure the child is getting optimal care. To that end, she says it is critical that pediatricians share information on the child’s health (even if it is not related to diabetes) with the endocrinologist or diabetologist, and vice versa.

For pediatricians who act as the primary provider for these children without easy access to an endocrinologist or diabetologist, Levitsky emphasizes the immense amount of time needed to help these children manage their diabetes. As such, she says that pediatricians need to be willing to spend a lot of time with these children to get to know them.

To help pediatricians and other healthcare providers recognize and better understand the challenges of helping children manage their T1D, Levitsky spoke on several pitfalls in the management of children with T1D at the recent American Academy of Pediatrics (AAP) annual meeting, held in Washington, DC, last October. In her talk, she focused on challenges both at home and at school, and on issues that pediatricians and other healthcare providers need to look out for when educating these children and their parents.

NEXT: Pitfalls at home

Pitfalls at home

Among the main challenges to children in controlling their diabetes is inadequate parental involvement. Educating parents and other caregivers on appropriate diabetes care is therefore essential, as highlighted in the updated American Diabetes Association (ADA) guidelines, Standards of Medical Care in Diabetes-2016 (Table 2).⁵

According to Levitsky, certain parenting styles are more problematic than others in helping children manage their diabetes. Parents who are too hands-off, or who put too much responsibility in the hands of the child at an age when the child is not yet ready to take on that kind of responsibility, require education on the need to be more involved in monitoring their child’s diabetes.

Instead of blaming children for not managing their diabetes, Levitsky said that pediatricians and other care providers can teach parents to look ahead prospectively to see how the child may need help in handling a problem. She emphasized teaching parents or caregivers to reward the child for things unrelated to diabetes management instead of devoting all their attention to the child’s diabetes.

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“Good parenting skills are important for all children, but are particularly important in the management of children with chronic illness like diabetes,” she said. “Pediatricians can certainly reinforce that parents adopt a nurturing approach to the management of diabetes in their child.”

Among the specific pitfalls of home monitoring is that children need help on information processing and decision making. Levitsky presented several case studies illustrating situations in which children need help processing information from, for example, continuous glucose monitoring devices.

Integral to getting parents more involved in their children’s care is also helping them become more aware of psychological dynamics between parents and children that often can interfere with good diabetes control. For example, Levitsky provided several case studies in which parents’ unwittingly, perhaps, put too much trust in their child’s apparent competence to manage their own diabetes only to discover how poorly the child was doing. (See “Case study of home monitoring: Need for parental involvement).

NEXT: ADA recommendations

NEXT: Pitfalls at school

Pitfalls at school

Diabetes in children is considered a disability and therefore these children are protected under Section 504 of the American Disabilities Act (ADA).⁶ In schools, these protections include providing appropriate care for students while they are in school as well as training nurses and other school staff on the needs of students with diabetes.

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Although these protections are in place, Levitsky noted that these protections are not always met. She said that assuring school administrators that diabetes management does not interfere with learning or lunch is the biggest issue in middle school and high school.

Healthcare providers can help educate school officials on the importance of treating children with T1D no differently than other children by providing a Diabetes Medical Management Plan (DMMP). This written order by the healthcare provider furnishes information on the frequency of care and the student’s ability to self-manage. It also includes emergency contact information, and individualized information on the particular diabetes management at school agreed upon by the student’s care provider and parent. Table 3 provides a list of issues that the DMMP should address.⁶

Summary

Children and adolescents with T1D will require lifelong management to maintain good glucose control. Parental involvement is critical to ensure children understand and learn how to manage and monitor their blood glucose levels. Pediatricians are an integral part of a multidisciplinary team to help educate children and their parents and caregivers on the challenges of monitoring and maintaining good blood glucose control. They also can help educate schools by providing a health plan for each student with T1D on his or her individual needs for optimal diabetes management.

REFERENCES

1. Craig ME, Jefferies C, Dabelea D, Balde N, Seth A, Donaghue KC; International Society for Pediatric and Adolescent Diabetes. ISPAD Clinical Practice Concensus Guidelines 2014. Definition, epidemiology, and classification of diabetes in children and adolescents. Pediatr Diabetes. 2014;15(suppl 20):4-17.

2. Chiang JL, Kirkman MS, Laffel LM, Peters AL; Type 1 Diabetes Sourcebook Authors. Type 1 diabetes through the life span: a position statement of the American Diabetes Association. Diabetes Care. 2014;37(7):2034-2054.

3. Li L, Jick S, Breitenstein S, Michel A. Prevalence of diabetes and diabetic nephropathy in a large U.S. commercially insured pediatric population, 2002-2013. Diabetes Care. 2016;39(2):278-284.

4. International Society for Pediatric and Adolescent Diabetes (ISPAD). ISPAD Clinical Practice Consensus Guidelines 2014. Pediatr Diabetes. 2014;15(suppl 20):1-290 Available at: http://www.ispad.org/?page=ISPADClinicalPract. Accessed March 10, 2016.

5. American Diabetes Association. Chapter 11: Children and adolescents. In: Standards of Medical Care in Diabetes-2016.Diabetes Care. 2016;39(suppl 1):S86-S93. Available at: http://care.diabetesjournals.org/site/misc/2016-Standards-of-Care.pdf. Accessed March 10, 2016.

6. Jackson CC, Albanese-O’Neill A, Butler KL, et al. Diabetes care in the school setting: a position statement of the American Diabetes Association. Diabetes Care. 2015;38(10):1958-1963. 

From Levitsky LL. Pitfalls in the management of type 1 diabetes at home and at school. Presented at: American Academy of Pediatrics National Conference and Exhibition; October 26, 2015; Washington, DC. Session F3059. Used with permission of the American Academy of Pediatrics.

Ms Nierengarten, a medical writer in Minneapolis, Minnesota, has more than 25 years of medical writing experience, authoring articles for a number of online and print publications, including various Lancet supplements, and Medscape. She has nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article.