The transition from pediatric to adult diabetes care represents a high-risk period for a person with diabetes, a perfect storm during which interruption of care is likely for multiple reasons. The young person is leaving what has often been a long-term, comfortable relationship with health care providers, sometimes without preparation or ready access to a subsequent provider. There are also multiple psychosocial adjustments during the postadolescent period of emerging adulthood that can be confounded by financial stressors. Poor glycemic control, the presence of risk factors for complications (hypertension and dyslipidemia), high-risk behaviors (cigarette smoking and drug and/or alcohol abuse), and emerging complications may further increase the difficulty of this period. The period of emerging adulthood may be accompanied by uncertainty regarding health insurance coverage upon completing education or leaving the parental home. Given that individuals in this transition period have had the highest rates of uninsurance or underinsurance in the past, the reforms of the Patient Protection and Accountable Care Act in the U.S. should be of particular benefit to emerging adults with chronic conditions such as diabetes.
The following sections elaborate on eight areas of particular relevance for the emerging young adult with diabetes: differences between pediatric and adult care, poor glycemic control, loss to follow-up care, acute complications, psychosocial issues, reproductive health issues, substance use and abuse, and chronic complications.
Differences between pediatric and adult care
There are fundamental differences in the approach and delivery of diabetes care between pediatric and adult patients. Diabetes care for pediatric patients requires involvement of the family in order to be successful. Young children do not have the cognitive ability to master diabetes management, and teens often do not possess the emotional maturity to sustain the tasks of daily therapy. Although health care delivery varies by system and access, in the pediatric health care setting, visits tend to be family-focused, holistic, and centered on management approaches that fit diabetes into the child and family's lifestyle. Diabetes visits and management approaches include parents/guardians as well as the youth.
In adult care, the focus is more on the autonomously functioning individual patient, who can be informed or counseled but then is expected to make his/her own choices about behavior or treatments. Adult visits tend to be substantially shorter and focused on medical problems. Adult patients choose who they do and do not want to have access to their health information and are largely considered independent consumers of health care. Whereas individuals change gradually from childhood to adulthood, the change in health care provider can be abrupt and unsettling, suggesting that a more gradual transition may be preferable.
Poor control of glycemia and other risk factors
There remains a considerable gap between the recommended glycemic control levels and the levels actually achieved in clinical practice, especially for older teens and young adults. The SEARCH for Diabetes in Youth study showed that only 32% of youth with type 1 diabetes aged 13–18 years and 18% of those aged ≥19 years achieved ADA-recommended A1C targets (17
). On the other hand, National Health and Nutrition Examination Survey data reveal that 56% of adults achieve target A1C values of <7% (18
). The greatest proportion of youth with type 1 or type 2 diabetes in poor glycemic control (A1C ≥9.5%) were teenagers; one of every four patients aged >12 years had such elevated A1C levels (17
). Others have documented poor glycemic control during the older teen and young adult years (19
). Those in the poorest glycemic control are at high risk for both acute complications and chronic microvascular complications (20
The prevalence of cardiovascular risk factors is much greater in youth with type 2 versus type 1 diabetes, regardless of ethnicity (22
). However, as the general obesity rates among all U.S. children and adolescents increase, youth with type 1 diabetes have experienced similarly increasing rates and may have additional cardiovascular risk, partly as a result of the suboptimal diets reported in youth with either type 1 or type 2 diabetes (23
). Studies show higher rates of dyslipidemia in obese children and adolescents with type 2 diabetes (22
). Elevated lipid levels in youth with type 1 diabetes appear to be related to level of glycemic control (26
). The rates of hypertension in children and adolescents with diabetes compared with those without diabetes are largely related to overweight or obesity status. Fatty liver disease is also more common among obese children with insulin resistance and diabetes, may precede the diagnosis of type 2 diabetes, and has also been linked to type 1 diabetes (27
). Progression and optimal treatment of fatty liver disease is not known in adolescents, but the disease can progress to cirrhosis and death. These risk factors need to be addressed in the adolescent and transitioning young adult.
Loss to follow-up
The competing distractions of young adult life often interfere with the requirements of successful diabetes management, including the need to maintain consistent medical care. Transitioning older teens and young adults are at high risk for disengagement from health care and, in turn, the emergence of complications that may go undetected without appropriate follow-up diabetes care and screening. There are adverse short-term (hypoglycemia, hyperglycemia, or diabetic ketoacidosis [DKA]) and long-term (nephropathy and retinopathy) outcomes when patients with diabetes are lost to follow-up or have infrequent encounters (21
). Rates of hospitalization and emergency use and costs of care are higher when glycemic control is poor (21
). Glycemic control and diabetes outcomes are also poorer when patients do not understand or participate in their care.
The relative risk of death is higher for young adults with diabetes than for those without diabetes (30
). Lapses in care or loss to follow-up accounts for some of these adverse outcomes of transitioning older teens and young adults (31
). Older teens and young adults with diabetes, especially those from racial/ethnic minority or low socioeconomic status backgrounds, require increased access to care in order to maintain continuity and coordination of multidisciplinary support and to receive ongoing self-management support. Continuous follow-up helps reduce the need for costly, acute hospitalizations and provides for early intervention of chronic complications to optimize long-term health outcomes and functioning.
Increased risk for acute complications
A variety of factors may increase the risk of hypoglycemia and severe hyperglycemia or DKA in transitioning youth, including loss of parental supervision of diabetes care and reduced attendance at diabetes medical visits. The challenges of work and/or school often take precedence over diabetes care. Other lifestyle changes may include increases in alcohol consumption, changes in physical activity levels, varying motivation for self-care (as emerging young adults separate from parents), and differing dietary patterns from a more controlled family-home environment. Although data are lacking on the incidence of severe hypoglycemia and DKA during the early transition years, in the Diabetes Control and Complications Trial (DCCT) adolescents aged 13–17 years at study entry and 20–24 years at study's end had a higher rate of severe hypoglycemia than adults (34
). Rates of DKA in older adolescents are associated with nonadherence and poorer glycemic control (35
Recent studies of continuous glucose monitoring (CGM) have assessed rates of overnight hypoglycemia in individuals aged 15–24 years, with nocturnal hypoglycemia documented during 8.8% of nights (36
). Real-time CGM and sensor-augmented pumps have the potential to reduce the incidence of hypoglycemic events while improving A1C in those with type 1 diabetes, although poor adherence regarding consistent CGM usage during the adolescent and young adult years has been a major limiting factor (37
Psychosocial challenges are common during emerging adulthood, occur more often in those with diabetes compared with those without diabetes, and occur more commonly during emerging adulthood than during other stages of life. Living with diabetes often brings with it a broad range of diabetes-related distresses. Diabetes-specific stressors that occur frequently and interfere with effective self-care include not having clear and concrete goals for diabetes care; feeling discouraged and overwhelmed with the diabetes regimen; uncomfortable interactions concerning diabetes with family, friends, or coworkers who do not have diabetes; feelings of guilt or anxiety about getting off track with diabetes self-care; and worrying about the future and the possibility of serious complications (38
). Anxiety disorders, the most frequently diagnosed psychiatric disorder in the general population, can complicate living with and self-management of diabetes, for example when fear of injections triggers panic attacks, when symptoms of anxiety are confused with hypoglycemia, or when anxiety about hypoglycemia becomes unmanageable.
Depression or the presence of depressive symptoms is a well-known comorbid condition for individuals with diabetes. In addition to being a barrier to effective diabetes self-management, depression is linked to poor glycemic control (39
) and diabetes complications (40
). In adolescents with diabetes, including 18- to 20-year-olds, 15–33% report depressive symptoms (41
), while 23–35% of emerging adults (18–28 years of age) with diabetes do so (43
). Recent data from the Treatment Options for type 2 Diabetes in Adolescents and Youth (TODAY) study document similar levels of depressive symptoms in adolescents with type 2 diabetes, with rates of clinically significant depressive symptoms exceeding 20% in older adolescent females (44
). In addition, depressive symptoms were inversely associated with quality of life. Recognizing the trajectories of depressive symptoms to worsen and impact physical and psychosocial well-being as older teens transition into young adulthood, it is important to monitor and refer older adolescents and young adults with type 1 or type 2 diabetes to appropriate mental health resources.
Adolescent and postadolescent young women with diabetes have 2.4 times the risk of developing an eating disorder than age-matched women without diabetes (45
). Although disordered eating behaviors occur in both sexes, they are much more common in women than men. About 30% of all women taking insulin struggle with subclinical symptoms of disordered eating, such as restrictive eating, a preoccupation with weight and shape, feelings of guilt after eating, and strategic misuse of insulin for weight control (46
). Up to 60% are trying to lose weight with unhealthy weight control behaviors (47
), with some studies showing as many as 57% of adolescents and young adults involved in the particularly unhealthy weight control behavior of intentional insulin mismanagement (48
). One survey of 11,855 Minnesota students attending 2-year and 4-year colleges or universities revealed that about twice as many students with type 1 diabetes had been diagnosed with anorexia or bulimia compared with students without type 1 diabetes (overall survey results at http://www.bhs.umn.edu/surveys/index.htm
; data on type 1 diabetes not displayed).
Clinically diagnosable eating disorders such as anorexia and bulimia as well as subclinical disordered eating attitudes and behaviors present a serious health risk to the emerging adult with diabetes. Disordered eating is associated with poor metabolic control, reduced adherence, depression, increased risk of DKA, and increased rates of microvascular complications in women with diabetes (20
). Severe eating disorders, especially anorexia nervosa and purging through insulin omission, are life threatening, and such patients may require hospitalization on an inpatient eating disorders unit experienced in taking care of patients with type 1 diabetes. Disordered eating is not exclusive to youth with type 1 diabetes; 6% of a large cohort of adolescents with type 2 diabetes had clinical and 20% had subclinical levels of binge eating behaviors associated with more extreme obesity, global eating disorders, depressive symptoms, and poorer quality of life (51
In summary, eating disorders and affective disorders are especially serious in emerging adults who have diabetes because insulin omission, depression, anxiety, and fear of hypoglycemia interfere with diabetes self-care behavior during a time when these patients may have fallen between the cracks of the pediatric and adult health care systems. Moreover, longitudinal cohort studies have revealed that there is a subgroup of adolescents with serious mental health and behavior problems who continue to deteriorate as they enter their 20s, often with onset of microvascular complications and early mortality. Clinicians who care for emerging adults with type 1 diabetes need to evaluate the mental as well as the physical health history of their new patients and foster access to mental health providers for consultation and collaborative care for the diagnosis and treatment of eating disorders, depression, anxiety, and fear of hypoglycemia. The same principles hold for individuals with type 2 diabetes, although there are fewer published reports. Because the TODAY study is a longitudinal study of adolescents with type 2 diabetes, this investigation will provide important data on the onset, progression, and possible resolution of disordered eating behaviors and depression as these patients enter emerging adulthood (51
Sexual and reproductive health issues
There is no reason to expect that emerging adults with diabetes will behave differently than their peers with respect to the potential for unintended pregnancies and acquisition of sexually transmitted infections. Thus, sexual behavior and reproductive health are important areas for discussion by both pediatric and adult care providers, even when the many medical issues related to diabetes and its complications tend to take precedence, delegating these issues to a secondary status.
Contraception needs to be addressed with adolescents and young women with diabetes—even more so than in women without diabetes—because of the need for reproductive planning in order to avoid unplanned pregnancies and maximize the outcomes of diabetic pregnancies. Contraceptive use to prevent pregnancy is lower among adults with diabetes aged 20–44 years; 39% of those with diabetes were not current users of contraception compared with 27% of adults without diabetes (52
). Among teens aged 13–19 years with diabetes, only 16% reported using birth control and, among those ever sexually active, 67% had ever used birth control (53
). An increasing number of young women with preexisting diabetes are becoming pregnant and delivering babies (54
). Given that the highest pregnancy and birth rates occur in the 18- to 30-year-old age range, the importance of preconception counseling and care for individuals with type 1 and type 2 diabetes is clear. Fewer than one in four young women aged 16–20 years with diabetes were aware of maternal and fetal risks of pregnancy and of the need for good glycemic control in order to conceive and give birth to a healthy child (55
). Although preconception care is often not a routine part of ongoing diabetes care, the development of a reproductive health plan as suggested by the Centers for Disease Control and Prevention Select Panel on Preconception Care is essential (http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5506a1.htm
Alcohol, smoking, and drug abuse
Emerging adults with diabetes may risk their health by involvement in behaviors such as drinking alcohol and smoking cigarettes. Among samples of adolescents and emerging adults with diabetes, alcohol and tobacco use seem equivalent to rates in those without diabetes. Alcohol use worsens glycemic control (56
) and is a known risk factor for severe hypoglycemia, while cigarette smoking increases cardiovascular risk and risk for microalbuminuria among adolescents and emerging adults with diabetes (57
). Involvement in these and other high-risk behaviors such as drug abuse places these youth at risk for immediate and long-term diabetes complications. In addition, such high-risk behaviors impinge upon the safety of the older adolescent and young adult who is beginning to drive. Risks of these behaviors as well as the risks associated with hypoglycemia while driving should be discussed. Abstinence from alcohol and substance use while driving should be directly discussed, and appropriate blood glucose monitoring along with prevention and treatment of hypoglycemia before and during driving should be established.
Emergence of signs of chronic diabetes complications
Rates of clinically apparent diabetes complications are low in adolescents, although there is evidence of early microvascular complications. About 10% of adolescents with type 1 diabetes have microalbuminuria (59
), whereas ~30% of teens with type 2 diabetes have microalbuminuria (27
); the SEARCH study has verified a threefold higher rate of microalbuminuria in youth with type 2 compared with those with type 1 diabetes (60
). Higher rates of microalbuminuria and hypertension are seen in youth with type 2 than youth with type 1 diabetes, despite the fact that those with type 2 diabetes on average have shorter duration of disease (61
). Retinopathy is rare among teens with type 1 diabetes, although more common than among teens with type 2 diabetes (61
); data are forthcoming from the TODAY study regarding the rates of retinopathy among teens and young adults with type 2 diabetes to supplement the modest data currently available. When neuropathy testing is performed, ~20% of adolescents with diabetes have evidence of peripheral sensory polyneuropathy and/or findings of autonomic neuropathy (61
The beginnings of atherosclerotic disease occur in children and adolescents (62
). Risk factors such as elevated LDL cholesterol level, reduced HDL cholesterol level, smoking, and higher A1C levels were associated with fatty streaks and raised intimal lesions in autopsy studies. Predictors of abnormal vessels in the Bogalusa Heart Study included high BMI, high total and LDL cholesterol, elevated triglycerides, and high systolic and diastolic blood pressure (63
). Therefore, risk factors similar to those identified in older individuals impact the development of atherosclerosis in adolescents and young adults. The presence of diabetes is associated with elevated carotid artery intima-media thickness, stiffer blood vessels independent of lipids, and higher levels of inflammatory markers compared with nondiabetic individuals (64
Although pediatricians treat diabetes complications infrequently, adult physicians follow guidelines that are specifically written to address the complications of diabetes. Adult guidelines are often based on data from older adults, usually with type 2 diabetes; therefore, their application to younger individuals with type 1 diabetes needs to be individualized. Nonetheless, discussion of diabetes-related complications and preparation of the transitioning older teen or young adult for changes in care practices should occur prior to transition.