Smoothing the Care Team Transition for Youth With Type 1 Diabetes
At home and at school, adolescents are seeking independence and privacy, but they may not be mature enough to plan their T1D self-management.
Adolescence is a precarious period, and for those who have type 1 diabetes (T1D), it can herald poor glycemic control, emergency department visits, and diabetic ketoacidosis episodes.1,2 With long-term and deliberate planning, poor glycemic control and its sequelae do not have to happen during the transition from pediatric to adult care.
Easing the Transition to Adult Care
At home and at school, adolescents are seeking independence and privacy, but they may not be mature enough to plan their T1D self-management.1 The transition should be a gradual process, with a plan to make the change when the patient is ready, not at a pre-determined time.1 Before the transition occurs, adolescents need to learn how puberty affects their endocrine system and how their inability to manage T1D could have serious consequences.1 To this end, adolescents should be taught how to recognize a hypoglycemic episode and how to manage it, the dangers of erratic meal schedules, and how exercise affects metabolism.1
“The notion of complications at some indeterminate time in the future is an abstract existential threat for young people with T1D,” said lead recommendations author Professor Fergus Cameron, MD, from the Royal Children's Hospital and Murdoch Children's Research Institute at the University of Melbourne in Parkville, Victoria, Australia. “Immature youth may struggle with abstract concepts and an additional existential burden upon potential poor mental health may be overwhelming. The issue of complications should preferably not be used as a threat.”
For girls, new recommendations stress the importance of preconception counseling in early puberty and discussing contraceptive choices, including long-acting reversible contraceptives such as intrauterine devices and implantable rods.1 They also need to be aware of the cardiovascular risks associated with some hormonal oral contraceptives, as well as how poor glycemic control affects fetal development.1
Weight gain is a sensitive topic for adolescents, who may notice how puberty is affecting their habitus.1 This is why it is critical for clinicians to recognize the psychosocial aspects of this vulnerable population, who are gaining independence without necessarily realizing the implications of their actions.1
Monitoring Adolescents' Mental Health
New recommendations instruct caregivers to monitor for signs of mental illness related to depression, eating disorders, and illicit drug use.1 Both pediatric and adult endocrinologists need to be aware of more than just the patients' HbA1c because psychiatric illness can also affect adolescents' adherence.1
One major aspect of mental illness in patients with T1D is diabetes distress, which is demonstrated by depressive-like symptoms that accompany the chronic disease when patients are stressed about self-management and the constant vigilance required to maintain good health.3 Hood and colleagues theorized that young patients given adequate support and education would have better overall outcomes and better mental health. To test this hypothesis, 264 young adults (aged 14 to 18 years) in Chicago and San Francisco were randomly assigned to receive either the Penn Resilience Program for type 1 diabetes (PRP T1D) or the Advanced Diabetes Education program. Though the intervention lasted only 4.5 months, the young participants were assessed at baseline and at 4.5, 8, 12, and 16 months for the following outcomes: diabetes distress, depressive symptoms, resilience, diabetes self-management, and glycemic control.3
The researchers found that the patients who received the PRP T1D intervention had considerably less diabetes distress than their peers in the Advanced Diabetes Education group.3 While both programs sought to provide young patients with tools to cope better with their chronic disease, the PRP T1D program had less diabetes-specific problem-solving education.3 Hood and colleagues will report final results in 3 years.3
Coordinating the Care Teams
The transition from pediatric to adult care is not determined by age, but rather is marked by adolescents' behavioral milestones, such as seeing clinicians without their parents and taking on greater responsibility for T1D self-management.4 It also helps to identify how a successful transition appears: adolescents coordinate their own appointments, meet independently with the care team, maintain glycemic control, and avoid complications requiring emergency care.4
The American Diabetes Association (ADA) recommends planning a year in advance of the transfer from pediatric to adult T1D care, with a gradual transition of self-care responsibilities such as scheduling appointments, glucose monitoring, and insulin administration.2 The pediatric team should provide the adult care clinicians with a report of the patient's glycemic control, self-care proficiency, and a complications history.2 Ideally, a patient liaison or navigator could help the adolescent or young adult with a smooth transition and provide him or her with patient resources.
Telemedicine May Ease the Transition
To lessen the alienation that adolescents and young adults may feel when they transition to adult care, telemedicine may provide a bridge to patient engagement.5 Reid and colleagues found that young adults (mean age, 19.8 years) who were given the opportunity to schedule virtual appointments via a secured internet connection on their computer, tablet, or phone (n=42) had greater overall satisfaction (P<.0001) than their counterparts who received standard in-office care (n=39).5
Compared with patients in the control group, 74% of the young adults who received telemedicine appointments with either a pediatric endocrinologist or in a group with a diabetes educator met the ADA guidelines of quarterly visits vs 8% of those in the control group.5 While neither group demonstrated mastery of HbA1c self-management, the telemedicine group was twice as likely to adhere to their regimens than their control group peers.5
“Providers need to consider what is happening outside of the clinic, which impacts adolescents' and young adults' ability to manage their T1D,” said Jennifer Raymond, MD, MCR, associate professor of clinical pediatrics, clinical diabetes director of the Center for Endocrinology, Diabetes, & Metabolism, and vice chair of the Executive Telehealth Committee at Children's Hospital Los Angeles in California. “Telehealth may be one way to respect the challenges and competing demands in the lives of adolescents and young adults with T1D.”
Peer Support Groups for College Students
An estimated 53,000 college students in the United States have T1D, and less than one-third of them attend clinic regularly.6 To better help college students cope with their chronic disease, university peer-led groups such as the College Diabetes Network (CDN) provide students with counseling and support.6
Saylor and colleagues examined a national sampling from the CDN (N=317; ages 18 to 30 years) to determine how these groups assist young adults with T1D and found that students who joined such groups reported less isolation and anxiety about their T1D.6 By laboratory measures, the peer groups did not appear to improve students' health, but the participants were more likely to make better use of disability accommodations for their chronic illness (P<.0012).6
“Having peers that understand your condition, be there when you're hypoglycemic at the gym, or eat a meal together and not feel stressed about checking your blood sugar is life-changing,” said Dr Saylor, PhD, assistant professor at University of Delaware's School of Nursing in Newark, Delaware. “College students with T1D living on campus must constantly manage their disease with changes in sleep, nutrition, physical activity, study habits, and potentially their support network. Clinicians should consider approaching emerging young adults with the understanding that their psychosocial needs are just as important if not more important than T1D management, especially among college students living on campus.”
Summary and Clinical Applicability
Adolescence can be especially difficult for patients with T1D because it is usually the time that they transition from pediatric to adult care. With members of the pediatric and adult care teams working in harmony to create a smooth exchange, adolescents with T1D can better manage their disease and avoid unnecessary hospitalizations due to poor self-management.
- Cameron FJ, Garvey K, Hood KK, Acerini CL, Codner E. Diabetes in adolescence [published online June 13, 2018]. Pediatr Diabetes. doi: 10.1111/pedi.12702
- Peters A, Laffel L; American Diabetes Association Transitions Working Group. Diabetes care for emerging adults: recommendations for transition from pediatric to adult diabetes care systems: a position statement of the American Diabetes Association, with representation by the American College of Osteopathic Family Physicians, the American Academy of Pediatrics, the American Association of Clinical Endocrinologists, the American Osteopathic Association, the Centers for Disease Control and Prevention, Children with Diabetes, The Endocrine Society, the International Society for Pediatric and Adolescent Diabetes, Juvenile Diabetes Research Foundation International, the National Diabetes Education Program, and the Pediatric Endocrine Society (formerly Lawson Wilkins Pediatric Endocrine Society).Diabetes Care. 2011;34(11):2477-2485.
- Hood KK, Iturralde E, Rausch J, Weissberg-Benchell J. Preventing diabetes distress in adolescents with type 1 diabetes: results one year after participation in the STePS program [published online June 19, 2018]. Diabetes Care. doi: 10.2337/dc17-2556
- Garvey K, Laffel L. Transitions in care from pediatric to adult health care providers: ongoing challenges and opportunities for young persons with diabetes.Endocr Dev. 2018;33:68-81.
- Reid MW, Krishnan S, Berget C, et al. CoYoT1 clinic: home telemedicine increases young adult engagement in diabetes care. Diabetes Technol Ther. 2018;20(5):370-379.
- Saylor J, Lee S, Ness M, et al. Positive health benefits of peer support and connections for college students with type 1 diabetes mellitus. Diabetes Educ. 2018;44(4):340-347.