Despite ongoing improvement in diabetes care, which includes increased use of diabetes technology, the majority of young adults with type 1 diabetes (T1D) do not meet glycemic targets set forth in clinical guidelines.1 Each year, tens of thousands of young adults with T1D transition from pediatric to adult care, and this transition is accompanied by unique challenges.2 During this vulnerable time, lack of parental involvement, financial struggles, irregular schedules, poor diet, peer pressure, drugs and alcohol, inconsistent clinic attendance and fear of hypoglycemia are all barriers to optimal diabetes outcomes.3 These young adults must assume responsibility for navigating the health-care system at a time when they are also navigating transitions to the workplace or to college and independent living, and potentially being uprooted from their established diabetes support network. Gaps in diabetes care can lead to deteriorating diabetes outcomes, acute complications, development of undetected chronic complications, and psychosocial stressors.2 Successful transition from pediatric to adult care and to self-sufficient diabetes management is a challenging but critical objective.
Emerging adulthood and young adulthood
Contemporary voices in developmental psychology propose that the post-adolescent period is divided into two stages: 1) emerging adulthood in the years immediately after high school (~18 to 24 years) and 2) young adulthood during the time when traditional adult roles are adopted (~25 to 30 years).4 Thinking about patient care within this framework can help the clinician to match diabetes management recommendations appropriately to the post-adolescent’s life experiences and readiness to become fully independent in their own diabetes management.
In emerging adulthood (18 to 24 years of age), individuals may be moving to new jobs, college, social interactions or living away from home for the first time. Diabetes care may become secondary to these competing priorities. At the same time, emerging adults may not have assimilated all of the skills necessary to independently manage their diabetes. For these reasons, it may be impractical to expect emerging adults to make major changes to their diabetes management or even to transition to a new diabetes provider (Table 1).2
In young adulthood (25-30 years of age), many individuals have an established identity and more stability, such as full-time work or an intimate partnership. This phase is often accompanied by newfound appreciation of the importance of self-care behaviors and glycemic management to overall health. Since many enduring patterns of behavior are established during this period, it is an important window of opportunity for health-care interventions.2
Diabetes care challenges in emerging and young adulthood
Only 17% of T1D emerging adults and 30% of young adults meet current glycemic targets.1 Emerging and young adults are less likely than any other age group to maintain a medical home and are more likely to utilize emergency departments for care.5 Competing priorities in this life stage often interfere with consistent medical care and place young adults at high risk for health care disengagement, including gaps in visits with the diabetes care team. Up to half of people in this age group will develop chronic diabetes complications, including retinopathy, neuropathy and hypertension.6 The relative risk of death is higher for young adults with diabetes than for those without.7 Lapses in care due to missed appointments account for some of these adverse outcomes.8
At the same time, young adults may have increased alcohol consumption, changes in/reduced physical activity, less access to nutritional foods, and decreased motivation for self-care behaviors such as self-monitoring of blood glucose (SMBG), leading to further risk for complications. Young adults with T1D have similar rates of substance use as the general population, including alcohol use (47.0%), binge drinking (29.9%) and smoking (34.7%).9 They are also at high risk for psychosocial challenges. Up to one-third of young adults with T1D have diabetes-related distress, anxiety or depressive symptoms, which are associated with worse glycemic outcomes and chronic and acute diabetes complications.10-11
Transition of care
The majority of emerging adults with T1D transfer to adult care between ages 18 to 22 years, and as noted above, this is a high-risk time period in a vulnerable population. If transition does not happen successfully, individuals are at higher risk for poor glycemic and psychosocial outcomes as well as hospitalization.12-13 The goal of an effective transition is to provide developmentally appropriate, uninterrupted health-care services as an individual moves from adolescence to adulthood.14 Clinicians who care for emerging and young adults with T1D need to evaluate the mental health and substance use patterns of their patients and ensure access to mental health providers and appropriate education.2 Both pediatric and adult providers should provide support and links to resources to combat these barriers to successful diabetes management.2
Transition can be divided into three stages: preparation, formal transition and evaluation. A structured transition program incorporating these stages can promote increased clinic attendance and satisfaction with care and decrease diabetes-related distress.15 If transition must occur during emerging adulthood, the process should be purposeful and structured in a way that includes significant levels of support and assistance.
Stages of transition
The preparation for transition can be thought of in two realms: the individual’s transition to independently managing T1D and the physical transition of care to an adult diabetes provider. Ideally, the transition of responsibility for T1D management to the emerging adult should be a gradual one, shepherded by the health-care team and the patient’s family and social support systems. There should be a steady and gradual transfer of responsibility for diabetes management from parent to child across the adolescent years, beginning as early as age 11. These responsibilities include not only day-to-day tasks, such as glucose monitoring and insulin delivery, but also scheduling office visits, ensuring the availability of adequate supplies and navigating insurance and health-care systems. The health-care team should provide intentional education to adolescents surrounding these topics, and the emerging adult’s diabetes knowledge and skill competencies should be objectively measured, not assumed.2
The transition of care from a pediatric to an adult health-care provider can be intimidating and requires advanced preparation. Unfortunately, fewer than half of adolescents discuss transition of care to an adult provider with their health-care team.12 This lack of dialogue results in poor outcomes, including gaps of greater than six months in diabetes clinic visits or loss to follow up.2 The American Diabetes Association recommends that pediatric providers prepare adolescents for the upcoming transition from pediatric to adult clinic a minimum of one year prior to transfer and during the early adolescent years when possible.2
Pediatric teams should also advise adolescents and emerging adults about some of the common differences between pediatric and adult providers’ clinics. Patients and families have reported their perceptions of pediatric endocrinology offices as family centered, more informal and socially oriented, while the adult clinical setting is perceived as more formal and more focused on diabetes complications.2,16 In addition, pediatric practices may have more patient support from diabetes educators, dietitians and psychologists; capacity to provide training on diabetes technology, such as insulin pumps, continuous glucose monitors and hybrid closed-loop insulin delivery systems; access to point of care laboratory testing, such as glucose and hemoglobin A1c (A1C); and more time allocated for clinic appointments.
When the time comes for transition of care, the pediatric diabetes care team should provide a written or electronic referral to a specific adult provider who is proficient in T1D management. Because emerging adults may be moving to a new geographic location, pediatric teams should consider creating a directory of providers with expertise in the care of young adults with T1D. The transferring team should assist the emerging adult with scheduling their first adult care appointment within three to four months of the final pediatric visit.2 A care coordinator can help with this task to ensure timely follow up.17 The transferring team should also provide resources to help the emerging adult reconnect to care should they become lost to follow-up.2 Whereas individuals gradually gain independence and transition into adulthood, the change in health-care team can be abrupt, and a more gradual change may be preferable.
The pediatric provider should give the patient and adult provider a written summary that includes an active problem list, current medications, assessment of diabetes self-care skills, summary of diabetes-related comorbidities and glycemic control, and a summary of any referrals or mental health diagnoses.2 The National Diabetes Education Program developed a clinical summary template (https://pedsendo.org/assets/patients_families/transition_toolkit/assets/Clinical-Summary-508.pdf) as well as a transition preparation checklist for providers (https://pedsendo.org/assets/patients_families/transition_toolkit/assets/Planning-Checklist-508.pdf) (Additional transition resources are available in Table 2). Actions such as providing the names of recommended adult providers, assistance with making appointments, and direct communication between pediatric and adult teams help support effective and successful transition.18
Adult providers often expect patients to make their own choices about diabetes behavior or treatments. However, when working with emerging adults, it is important that these providers recognize the continued supportive role of parents in the emerging adult population, who can be viewed as ongoing “consultants” in their children’s care.19 Higher levels of parental support in the year after high school are associated with stronger adherence to the diabetes care regimen, a lower incidence of depression, and fewer risk behaviors.20 Moreover, young adults view parents as important sources of support for diabetes management.21 Adult care providers should consult with their patients about how to include family members in the diabetes care process in a way that respects the emerging adult’s independence and simultaneously facilitates a strong diabetes social support network.
After transition has occurred, an evaluation phase should follow to ensure that a successful transition of care has taken place and the patient has not been lost to follow up. Young adults desire continuity of contact with their medical team, providers who consider their life circumstances when making diabetes care recommendations, and developmentally tailored care.22 Providers should ensure that the young adult feels that they are receiving accessible, coordinated, patient-centered and compassionate care.2
To achieve a successful transition from the pediatric to the adult diabetes care setting, the emerging adult, family members, and the pediatric and adult diabetes care teams must work in partnership. Transition of responsibility for diabetes self-care, for most patients, should begin in early adolescence and take place gradually, to ensure the emerging adult has achieved independence before the transition to an adult diabetes practice. The transition of care should be structured and purposeful, and a variety of resources are available to reduce the risk that the emerging adult will experience gaps in care and increase the probability of a positive and successful transition experience.
Access additional resources and practical information to enhance the care and treatment of your diabetes patients.
Anastasia Albanese-O’Neill, PhD, APRN, CDE, Assistant Clinical Professor, Director of Diabetes Education and Clinic Operations, Division of Pediatric Endocrinology, Department of Pediatrics, University of Florida, Gainesville, Florida