Diabetes in the Adolescent: Transitional Issues (original) (raw)

Abstract

Content:

Orchestrating a seamless transition from pediatric to adult care can be a daunting task in caring for youth with diabetes mellitus. This clinical review focuses on physical and psychosocial aspects affecting the care of adolescents and young adults with diabetes, evaluates how these aspects can be barriers in the process of transitioning these patients to adult diabetes care, and provides clinical approaches to optimizing the transition process in order to improve diabetes care and outcomes.

Evidence Acquisition and Synthesis:

A PubMed search identified articles related to transition to adult diabetes care and physical and psychosocial assessment of adolescents with diabetes. An Internet search for transition of diabetes care identified online transition resources. The synthesis relied on the cumulative experience of the authors. We identify barriers to successful transition and provide a checklist for streamlining the process.

Conclusions:

Key points in the transition to adult diabetes care include: 1) starting the process at least 1 year before the anticipated transition; 2) assessing individual patients' readiness and preparedness for adult care; 3) providing guidance and education to the patient and family; 4) utilizing transition guides and resources; and 5) maintaining open lines of communication between the pediatric and adult providers. No current single approach is effective for all patients. Challenges remain in successful transition to avoid short- and long-term complications of diabetes mellitus.

The term “transition” implies a gradual, coordinated seamless shift from one state to another, such as the transition from night to day. The timing and tempo of attempting this transition of care for adolescents with diabetes mellitus from a pediatric, family-centered model to an adult, patient-centered model represents an important phase in the life trajectory of affected patients involving physical, psychological, and practical considerations. The physical aspects are closely linked to the impact of puberty with its hormonal changes on body shape and size, including the induction of insulin resistance, which requires greater attention for self-monitoring and insulin adjustments (1). The psychological components also emanate, in part, from the impact of puberty on sexual awakening, a sense of immortality and indestructability leading to risk-taking behavior such as unprotected sexual activity, alcohol consumption, and inadequate checking of blood glucose to detect hypoglycemia before driving. These psychological adjustments all occur concurrently with the gradual assumption over a period of years of independent decision making. During this period, which varies among individuals, there may be not only less reliance on, but also frank rebellion at, parental or other authority figures. These elements fuse into the challenging considerations for integrating these components into a comprehensive, practical, individualized plan that attempts to maintain or improve metabolic control in order to assure good health and avoid acute metabolic complications such as hypoglycemia or episodes of diabetic ketoacidosis. Poor glycemic control is a common finding among adolescents with type 1 diabetes (T1DM), and this is closely associated with the development of vascular complications (2). Recent data from the Type 1 Diabetes Exchange has shown that only 21% of adolescents 13 to <20 years of age met the target hemoglobin A1c of <7.5% as recommended by the American Diabetes Association (ADA), with this percentage being much lower than that for the younger age groups (3). The long-term goal is to prevent future microvascular and macrovascular complications while a process of transition occurs from the structured, dependent, family-centered pediatric model with parental responsibility to the adult independent model with the assumption of self-responsibility. These important issues have been addressed in the position statement by the ADA, “Diabetes Care for Emerging Adults: Recommendations for Transition From Pediatric to Adult Diabetes Care Systems” (4), and The Endocrine Society's online practice management resource, “Managing the Transition of Care for Patients with Type 1 Diabetes” (5). Complicating this issue even further is the increasing evidence that individuals with T1DM have not escaped the general population trend toward overweight and obesity despite the traditional phenotype of T1DM being normal or underweight (6). Also linked to this trend of increasing obesity is the emergence of type 2 diabetes in adolescents and its greater association with vascular complications occurring at an earlier age than that found in adolescents with T1DM. In this paper, we review this topic, incorporating the three identified elements of physical, psychosocial, and practical aspects, emphasizing their importance, and pointing toward an emerging consensus on recommended approaches.

Hormonal Adaptations During Puberty

Puberty is associated with progressive increments in the secretion of FSH, LH, and the products of their target organs, leading to greater estrogen and T secretion from the ovary and testes, respectively. In addition, overall GH secretion markedly increases, particularly during sleep when the amplitude, but not frequency, of pulses increases (7). More than 30 years ago it was noted that whereas glucose tolerance remains indistinguishable between normal prepubertal, early pubertal, and late pubertal children, the insulin responses rise incrementally to approximately double the amount in late puberty as opposed to prepubertal children (8). The marked increase in insulin secretion is evident whether the glucose dose is given per kilogram or corrected per unit of surface area, confirming a state of insulin resistance (1). Likewise, the use of the euglycemic clamp technique demonstrates a marked difference in the insulin sensitivity index, which declines by about 50% between prepubertal and pubertal periods in a longitudinal study of a cohort of children (9). Notably, the first-phase insulin response is low when the insulin sensitivity index is high in prepubertal children, whereas as insulin sensitivity declines during puberty, a near doubling of insulin secretion is necessary during the first-phase response to compensate for the increased insulin resistance (4). The resistance to insulin action is restricted largely to glucose and carbohydrate; extraction of branched-chain amino acids during a hyperglycemic clamp is not affected and remains higher in the adolescents compared to preadolescents, indicating that insulin maintains its ability to stimulate the incorporation of amino acids into muscle (10). Thus, the insulin resistance of puberty, largely the result of increased GH secretion and normally compensated by increased insulin secretion, permits a synergistic effect of the higher GH and insulin together with the sex steroids T or estrogen to permit muscle growth and characteristic fat distributions in males and females (1, 9, 10). However, in adolescents who have diabetes, compensation for the increased insulin resistance induced by GH must be made by giving increased exogenous insulin. The psychological resistance of adolescents to this need for increased self-monitoring and adjustment of insulin is the major factor for the deterioration in metabolic control reported by various investigators during adolescence (11). Moreover, it has been suggested that psychosocial maturation has diverged significantly from biological maturation, as evident in the age at onset of puberty which has declined, whereas psychosocial maturation as defined by independent living or child rearing has become delayed (12). Thus, during this critical period of adolescent adjustment, the psychosocial factors including the sense of invulnerability and immortality, risk taking behavior, and rebellion at authority weigh heavily against the need for greater vigilance in monitoring and treating one's diabetes (4).

Psychosocial Considerations of Adolescence

Adolescence is an important stage of life for psychological, emotional, and social development. The psychosocial issues faced by adolescents, including development of identity, autonomy, and intimacy, are equally present in the lives of adolescents with diabetes. However, adolescents with diabetes are additionally confronted with diabetes-specific psychosocial stresses related to adherence with chronic medical regimens requiring frequent blood glucose monitoring, insulin administration, and dietary restraint (4). Recurrent tensions with concerned family members regarding diabetes management and personal fear of short- and long-term complications (including hypoglycemia) are further stressors faced by adolescents with diabetes.

Adolescence is traditionally the start of assuming independence in daily diabetes management, shifting from sharing responsibility with parents/guardians in early adolescence to self-management by the time of transition to young adulthood. Diabetes self-management is an important predictor of psychological well-being and correlates with glycemic control (13). If problems occur with adherence to the demands of self-management, diabetes control suffers (14). During this stage of developing independence in diabetes management, the motivating support of parents and diabetes team members influences adherence to self-care (15). A supportive parental relationship continues to be an important influence on the psychological well-being and health behaviors in young adults (16). Social support is an important part of adolescence, although not all youth with diabetes want their peers to know their medical condition (17). Young adults with diabetes report fewer friendships, resulting from a decrease in intimate friendships and a decrease in the level of intimacy and trust in love relationships, although the authors note the findings may not represent meaningful differences (18).

Young adults with diabetes, like young adults without diabetes, engage in risky health behaviors of alcohol and tobacco use; in a sample of 117 youth with diabetes, 47.0% reported alcohol consumption, 29.9% reported binge drinking, and 34.7% reported smoking (19). Although these results are not significantly different from the findings in the comparison cohort of 122 youth without diabetes, these high rates of risk behaviors are concerning, given that these behaviors are more likely to result in short- and long-term diabetes complications (20, 21). Recommendations for counseling adolescents regarding alcohol, tobacco, and illicit drug use have been put forth by the International Society for Pediatric and Adolescent Diabetes (22). Although refrainment should be advised, patients should also be educated about the risk of delayed hypoglycemia from alcohol consumption and methods to decrease the risk through monitoring blood glucose levels, maintaining hydration, and eating carbohydrates (22).

Adolescents with diabetes have comorbid psychological disorders including depression, anxiety, behavioral and eating disorders (23). However, it is not clear how much their frequency differs from nondiabetic adolescents because reports of increased prevalence compared to peers without diabetes are conflicting (24). There may be a time bias, with more recent studies indicating less of a difference in psychological difficulties between adolescents with or without diabetes (24). Longitudinal studies of adolescents with diabetes and healthy peers indicate that adolescents with T1DM have similar patterns of psychological and social development to peers without diabetes (18, 25). In another longitudinal study comparing early adolescents with T1DM and healthy peers, diabetes was not associated with more indicators of psychological distress (26). There was no difference between youth with and without diabetes in depressive symptoms, anxiety, anger, or behavioral problems, and when reassessed in late adolescence, both groups had similar levels of depressive symptoms and loneliness (19). However, for the adolescents with diabetes who have behavioral problems, the likelihood of poor long-term metabolic control is increased (27). In a recent meta-analysis, higher levels of psychological distress in youth with diabetes compared to their peers was associated with worse metabolic control (24). Furthermore, those youths with comorbid psychological disorders are at greater risk of failing to transition to adult diabetes care appropriately and hence becoming lost from routine health care (28).

Practical Clinical Aspects of Transition to Adult Care

Transition from pediatric to adult health care should be a “purposeful, planned movement” (29). For adolescents and young adults with diabetes, national recommendations and resources to direct diabetes care providers, patients, and their families through the transition process have been developed and published by The Endocrine Society (5), the American Diabetes Association (4), and the National Diabetes Education Program (30). Common themes in these transition guides are early preparation, patient education, and open conversation among the pediatric and adult providers, patients, and their families.

Because health care transition is not specific only to young adults with diabetes, the American Academy of Pediatrics endorses starting transition preparation in the context of a medical home early (31). Guidelines specific to pediatric patients with diabetes advise that transition planning starts at least 1 year before the anticipated move to adult care (4, 5, 30). Multiple factors impact the timing of transition, including the recommendation of pediatric providers (32), the patient's perceptions of being too old for pediatrics, and occurrence of other life-stage transitions such as starting college (33).

All three diabetes transition resources identified above recommend that planning should include a comprehensive medical summary prepared by the pediatric provider for the patient and new adult provider (4, 5, 30). The document should detail the patient's metabolic control, diabetes-related comorbidities and complications, medications, self-care skills, significant medical history, and pertinent family and social history. The preparation of such a summary also is an opportunity to assess the patient's diabetes knowledge and readiness for adult care. Ongoing diabetes education should stress self-management skills and independence in navigating health care, such as how to schedule appointments, inquire about insurance coverage, and obtain medications and supplies from the pharmacy. Age-appropriate anticipatory guidance for driving, use of tobacco and alcohol, as well as sexual activity should emphasize diabetes-related consequences. Patients should be informed about diabetes comorbidities and complications, the importance of monitoring blood pressure and lipids, as well as the importance of periodic screening for microvascular complications including retinopathy via ophthalmoscopy and nephropathy via urinary microalbumin excretion. The Endocrine Society's online practice management resource has a checklist as a means for a provider to assess the patient's knowledge of diabetes, self-management skills, and utilization of medical care (5).

Although transition preparation can be demanding for the pediatric provider, the extent of preparation is correlated with patient satisfaction. In a survey of young adults attending the Joslin Diabetes Center who had already transitioned to adult care, the reported level of preparedness for transition to adult care was positively associated with the reported level of satisfaction with the transition process (33).

Departure from pediatric diabetes care most often occurs between 17 and 21 years of age, based on reported mean age of transition to adult diabetes services (32, 34–40). The choice of the adult provider is often dependent on the local health care system and the recommendations of the pediatric provider. Methods of transition to the adult provider include direct transfer from a pediatric to adult diabetes clinic or transfer to a young adult clinic (staffed by adult providers or jointly by pediatric and adult providers) (36). If a formal transition method is not in place, geographic location and recommendations of friends and family also have an influence on the patient's choice of adult provider (34). Some patients remain in the pediatric clinic after reaching the age of majority, and for these patients, the pediatric providers in the United States need to be aware of the Health Information Portability and Accountability Act (HIPAA) and the requirements for releasing personal health information (41). Patients should understand that if they want health records, such as lab results or insulin dose adjustments, communicated to a family member on their behalf, their consent is required.

A recognized barrier to care for young adults in the United States has been a lack of health care insurance coverage (4). With the passage of the Affordable Care Act, insurance plans are required to offer dependent coverage until the age of 26, regardless of place of residence, educational status, and marital status (42).

Published reports indicate that after patients leave pediatric care providers, they do not always transition to an adult provider within the recommended 3-month interval. A gap of more than 6 months has been reported in 27–32% of surveyed patients in two studies from Canada and includes a gap of more than 12 months in 10–11% of these same surveyed patients (43, 44). Poor attendance before transfer has been associated with reported gaps in care (45), whereas appropriate preparation for transition is associated with a shorter interval between last pediatric and first adult care visit (33). Table 1 summarizes the physical, psychosocial, and practical barriers based on literature cited in the references.

Table 1.

Barriers in the Transition From Pediatric to Adult Diabetes Care

Multiple transition interventions have been reported in the literature as a way to improve the transition process. These interventions include use of a transition coordinator to facilitate the transition process, joint attendance of pediatric and adult diabetes care providers at the last pediatric clinic appointment and first adult clinic appointment, and a transition clinic (40, 46, 47). None of these reports involve the use of a randomized intervention, and they often lack a control group or appropriate control group to truly demonstrate that the interventions improve diabetes outcome during and after transition to adult care. Nevertheless, the interventions appear to be appreciated by patients. In a German survey, young adults who had transitioned to adult care valued having recommendations for an adult provider, knowing information about the adult provider, and attending a transition clinic or joint visit with a pediatrician and adult provider (34).

Different transition methods are being used by diabetes clinicians around the world (48). The setting of the clinic (ie, large academic center vs private clinic), location (ie, urban, suburban, or rural), and socioeconomic status of the patients are potential factors influencing the transition process, and further research is needed to evaluate the impact of these factors on transition methods. Also, transition methods are being developed for other chronic illnesses including cystic fibrosis (49), sickle cell disease (50), and organ transplantation (51). Understanding the success and barriers facing transition in these other chronic illnesses may provide further insight for improving healthcare transition for those with diabetes.

Although there is not likely a single best transition method that applies to all young adults with diabetes, as shown by the Diabetes Control and Complications Trial, intensive care including frequent contact with the patient improves glycemic control (52). The goal of transition should be to bridge care between two teams providing comprehensive diabetes care. In a survey from the United Kingdom, young adults who transitioned to an adolescent or young adult clinic in the same center as the pediatric clinic expressed higher satisfaction with the transition process than those young adults who transitioned to an adult clinic or a young adult clinic at a different location (36).

If the new adult clinic (whether it be a dedicated transition/young adult or general adult diabetes clinic) is at a different location, considerations should include introducing the patient to the new diabetes care provider(s) and clinic before the first appointment. Practical aspects, such as where to park, when to schedule the appointment to avoid missing responsibilities such as work or school, and how early to arrive for the first appointment, should be addressed before leaving the pediatric clinic. The first adult diabetes care visit should be comprehensive, including meeting with a certified diabetes educator, nutritionist, and mental health provider/social worker, if needed. Clear explanation of the clinic structure (such as how to reach a diabetes provider after hours for emergencies) should be communicated so that the patient understands possible differences from their pediatric diabetes clinic. Instructions should be clear, concise, and written out so as to avoid miscommunication and misunderstanding.

Table 2 provides a checklist of steps to be considered in the transition from pediatric to adult care. These practical aspects of transition may seem to be no more than common sense, yet they may be difficult to discuss in a short diabetes clinic visit every 3 months with competing, and often more urgent, medical issues to address. Transition may not be a high priority in the care of young adolescent patients with the thought that it can be addressed at the next visit. However, too often young patients leave pediatric diabetes care unannounced and unplanned. In a longitudinal study of 118 youth with diabetes in Pennsylvania, 22% had already transitioned from pediatric to adult care while in high school, 16% had transitioned within the year after high school graduation, and 8% were lost from the health care system after high school graduation (53). There was a significant difference in glycemic control among the groups of the youth seeing a pediatric or adult health care provider, with those already in adult care while in high school having higher hemoglobin A1c. It is not known whether transition planning was addressed with these youth. Future randomized control studies systematically evaluating transition methods are needed to assess whether transition planning promotes youth with diabetes remaining in the health care system and whether transition interventions influence diabetes outcomes.

Table 2.

Recommended Checklist for Transition From Pediatric to Adult Diabetes Care (Based on Literature Cited in Refs. 8, 24, and 25 and the Opinions of the Authors)

Conclusion

The convergence of hormonal changes of puberty, the psychosocial challenges of adolescence, and the conventional age limits of pediatric and internal medicine create an environment in which well-controlled diabetes can be a challenging goal to reach for the patient and provider. Early preparation for the inevitable transition with open communication among the pediatric and adult providers, patient, and family is recommended to facilitate a coordinated seamless shift from pediatric to adult health care.

Acknowledgments

S.K.L. has received grant support from T32DK007052-39 and T32DK007729 from the National Institute of Diabetes and Digestive and Kidney Diseases–National Institutes of Health.

All authors contributed equally to the conceptual design and authorship of the manuscript.

Disclosure Summary: S.K.L., I.M.L., and M.A.S. have nothing to disclose.

Footnotes

Abbreviation:

T1DM

type 1 diabetes.

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