Diabetes Care for Emerging Adults: Recommendations for Transition From Pediatric to Adult Diabetes Care Systems

Transcription

1 Diabetes Care for Emerging Adults: Reommendations for Transition From Pediatri to Adult Diabetes Care Systems The Harvard ommunity has made this artile openly available. Please share how this aess benefits you. Your story matters. Citation Published Version Aessed Citable Link Terms of Use Peters, Anne, and Lori Laffel Diabetes are for emerging adults: reommendations for transition from pediatri to adult diabetes are systems. Diabetes Care 34(11): doi: /d July 3, :26:01 PM EDT This artile was downloaded from Harvard University's DASH repository, and is made available under the terms and onditions appliable to Other Posted Material, as set forth at (Artile begins on next page)

2 Reviews/Commentaries/ADA P O S I T I O N S T A T E M E N T Statements Diabetes Care for Emerging Adults: Reommendations for Transition From Pediatri to Adult Diabetes Care Systems A position statement of the Amerian Diabetes Assoiation, with representation by the Amerian College of Osteopathi Family Physiians, the Amerian Aademy of Pediatris, the Amerian Assoiation of Clinial Endorinologists, the Amerian Osteopathi Assoiation, the Centers for Disease Control and Prevention, Children with Diabetes, The Endorine Soiety, the International Soiety for Pediatri and Adolesent Diabetes, Juvenile Diabetes Researh Foundation International, the National Diabetes Eduation Program, and the Pediatri Endorine Soiety (formerly Lawson Wilkins Pediatri Endorine Soiety) ANNE PETERS, MD, CDE 1 LORI LAFFEL, MD, MPH 2 THE AMERICAN DIABETES ASSOCIATION TRANSITIONS WORKING GROUP* D uring hildhood and adolesene, there is a gradual shift from diabetes are supervised by parents and other adults to self-are management. The atual hange from pediatri to adult health are providers signals a more abrupt hange that requires preparation by patients, their families, and their health are providers. A number of publiations from the U.S. and other ountries have highlighted substantial gaps in are during this transition period between pediatri and adult are that often arise in later adolesene and the subsequent developmentalstageoflifetermed emerging adulthood. Thisisaritialtimewhen patients not only assume responsibility for their diabetes self-are and interations with the health are system but when they beome more independent, potentially moving out of their parents home to attend ollege or to join the workfore (1). In the ontext of these transitions and the developmental issues of this age-group, gaps in diabetes are an result in suboptimal health are utilization, deteriorating glyemi ontrol, inreased ourrene of aute ompliations, emergene of hroni ompliations of diabetes that may go undeteted or untreated, and psyhosoial, behavioral, and emotional hallenges. With the inreasing inidene of both type 1 and type 2 diabetes in hildhood, adolesene, and young adulthood, there is an inrease in the absolute numbers of youth with diabetes in this transition period, From the 1 University of Southern California Kek Shool of Mediine, Los Angeles, California; and the 2 Joslin Diabetes Center, Harvard Medial Shool, Boston, Massahusetts. Corresponding author: Lori Laffel, lori.laffel@joslin.harvard.edu. DOI: /d *A omplete list of the members of the Amerian Diabetes Assoiation Transitions Working Group an be found in the APPENDIX. This position statement was peer-reviewed by members of the Professional Pratie Committee in July 2011 and approved by the Exeutive Committee of the Board of Diretors of the Amerian Diabetes Assoiation in August by the Amerian Diabetes Assoiation. Readers may use this artile as long as the work is properly ited, the use is eduational and not for profit, and the work is not altered. See lienses/by-n-nd/3.0/ for details. highlighting the need for a framework of are and eduation for this population and a all for additional researh in this area. Substantial hallenges relating to the transitional period inlude the following: The dearth of empirial evidene on the best approahes to the transition proess Fundamental differenes in health are delivery between pediatri and adult health are providers Lak of well-defined riteria for determination of transition readiness The hanging soial and demographi harateristis of young adults that may influene their utilization of health are Gaps in health insurane during this transitional period Differenes in learning styles between individuals in this transition period ompared with both younger hildren and adults beyond the period of emerging adulthood Defiienies in training of health are professionals in are delivery for emerging adults with diabetes Most of the limited evidene base has foused on transitions in are for youth with type 1 diabetes. The reent emergene of type 2 diabetes in hildren and teenagers highlights an absolute defiieny of studies on transitioning youth with type 2 diabetes from pediatri to adult are (2). Although some medial and psyhosoial issues may be different between these groups of youth with diabetes, many are assumed to be similar. are.diabetesjournals.org DIABETES CARE, VOLUME 34, NOVEMBER

3 Position Statement In Marh 2010, the Amerian Diabetes Assoiation (ADA) onvened a multidisiplinary group of experts and people with diabetes (see APPENDIX for organizations and individuals) to review the issues that onfront both youth and young adults with diabetes and health are professionals during this ritial transition proess from pediatri to adult are. The issues that need to be onsidered to understand the proess of transition were desribed and disussed. This resulting statement provides a framework for health are delivery during the transition period and an agenda for future researh. RATES OF DIABETES DURING THE TRANSITION YEARSdThe SEARCH for Diabetes in Youth study has estimated that about 15,000 youth are diagnosed annually with type 1 diabetes and about 3,700 are diagnosed annually with type 2 diabetes (3). In 2001, SEARCH estimated that there were approximately 154,000 youth under the age of 20 years with diabetes (3,4), and in 2010 the estimated number of youth with diabetes was 215,000, representing 0.26% of individuals in this age-group (5). Worldwide, the prevalene of type 1 diabetes in hildren and young adults has doubled in the past 25 years and is expeted to double yet again in the next years, a phenomenon not observed several deades ago (6,7). The epidemi of hildhood obesity has lead to an inreased inidene of type 2 diabetes being diagnosed in hildren and teenagers (8). Type 2 diabetes remains relatively unommon in hildren under age 10 years, with the majority of ases identified in youth during the 2nd deade of life and affeting predominantly those from raial and/or ethni minority groups, namely Amerian Indians, blaks, Hispanis, Asians, and Paifi Islanders (9 13). Furthermore, although the inidene of type 1 diabetes delines toward the middle to the late 2nd deade of life (age years) from the peak rates observed during puberty in early adolesene, the inidene of type 2 diabetes ontinues to inrease with age. There are limited epidemiologial data that span the age range from late adolesene through young adulthood (18 30 years of age), although there are data that preede and follow this key developmental period. The SEARCH study provides prevalene estimates for 15- to 19-yearolds in various raial and ethni populations (9 13). Prevalene of type 1 diabetes for this age-group ranges from 0.43 per 1,000 in Navajo youth to 3.22 per 1,000 in non-hispani whites, while the prevalene of type 2 diabetes ranges from 0.29 (non-hispani whites) to 2.36 (Navajo) per 1,000. In a survey of 11,855 young adults (41% response rate), ages years, attending 2-year and 4-year postseondary eduational institutions in Minnesota, 0.55% of students reported having a diagnosis of type 1 diabetes (E. Ehlinger, personal ommuniation). The size of the young adult population with diabetes is diffiult to know with ertainty. The overall numbers of hildren, adolesents, and young adults with diabetes in the U.S. in 2007 was estimated at lose to a million in a study of diabetes osts inluding the age-groups,18 and (14). Given the urrent estimates of the prevalene of diabetes in youth, one an expet that eah year there are tens of thousands of emerging young adults with type 1 or type 2 diabetes who will be transitioning from pediatri to adult are. EMERGING ADULTHOODdFor the purposes of this statement, we have hosen to fous on the age range of years. The preeding period of adolesent growth and development is a stage of tremendous physial, soial, and emotional hange that hallenges diabetes management for both youth and health are providers. During this stage of adolesent development, there is a need for ongoing family involvement in diabetes management in order to redue the risk of deterioration in glyemi ontrol that often aompanies adolesene (15). In ontrast to the views of traditional developmental psyhology, ontemporary thinking is that young adulthood does not immediately follow adolesene, but begins when youth are in their late 20s or early 30s and that the developmental stage between ages ;l8 and 30 years defines a period alled emerging adulthood (16). Reent ultural trends in Ameria suggest that young people in their 20s delay assuming adult roles with respet to marriage, parenting, and work ompared with young adults in earlier generations. Contemporary developmental theorist J.J. Arnett (16) suggests that the postadolesent period is subdivided into an early phase orresponding to the years immediately after high shool (;18 24 years) and a later phase when more traditional adult roles are assumed (;25 30 years). Thinking about the postadolesent period as onsisting of two phases provides a valuable framework when onsidering diabetes management and may help to ensure that the liniian s approah and fous are appropriately mathed to the emerging adult s life irumstanes and readiness to beome an ative partiipant in his/her own diabetes management. During the early phase of emerging adulthood, the person may be transitioning geographially, eonomially, and emotionally away from the parental home. Competing aademi, eonomi, and soial priorities often detrat from a foused ommitment to hroni disease management. Even as young adults fae these ompeting demands, most do not believe that they have ahieved all of the skills neessary to remain independent and aept these responsibilities on their own (16). Therefore, it may be unrealisti to expet the person with diabetes in the first phase of emerging adulthood to make major hanges in their diabetes management strategies, or even to transition to a new adult diabetes health are provider. Conversely, for many this early phase is marked by feelings of invulnerability and a tendeny to rejet adult ontrol, whih may further limit reeptiveness to reommendations for diabetes treatment. During the seond phase of the young adult period, the 25- to 30-year-old often has a maturing sense of identity and assumes adult-like roles in soiety, suh as entering into stable intimate relationships or full-time employment. This phase, when the individual starts making plans about his/her future life, is often aompanied by a growing reognition of the importane of striving for better glyemi ontrol and reeptiveness to improving self-are behavior. Life partners an be important supports and agents for hange, and a shared sense of investment in the future will often atalyze this hange in self-are behavior. This period, when lifelong patterns of behavior are likely established, an be a ritial window of opportunity for health are interventions. ISSUES IN THE TRANSITION BETWEEN PEDIATRIC AND ADULT DIABETES CAREdThe transition from pediatri to adult diabetes are represents a high-risk period for a person with diabetes, a perfet storm during whih interruption of are is likely for multiple reasons. The young person is leaving what has often been a longterm, omfortable relationship with health are providers, sometimes without preparation or ready aess to a subsequent provider. There are also multiple 2478 DIABETES CARE, VOLUME 34, NOVEMBER 2011 are.diabetesjournals.org

4 Peters, Laffel, and the Amerian Diabetes Assoiation Transitions Working Group psyhosoial adjustments during the postadolesent period of emerging adulthood that an be onfounded by finanial stressors. Poor glyemi ontrol, the presene of risk fators for ompliations (hypertension and dyslipidemia), highrisk behaviors (igarette smoking and drug and/or alohol abuse), and emerging ompliations may further inrease the diffiulty of this period. The period of emerging adulthood may be aompanied by unertainty regarding health insurane overage upon ompleting eduation or leaving the parental home. Given that individuals in this transition period have had the highest rates of uninsurane or underinsurane in the past, the reforms of the Patient Protetion and Aountable Care At in the U.S. should be of partiular benefit to emerging adults with hroni onditions suh as diabetes. The following setions elaborate on eight areas of partiular relevane for the emerging young adult with diabetes: differenes between pediatri and adult are, poor glyemi ontrol, loss to follow-up are, aute ompliations, psyhosoial issues, reprodutive health issues, substane use and abuse, and hroni ompliations. Differenes between pediatri and adult are There are fundamental differenes in the approah and delivery of diabetes are between pediatri and adult patients. Diabetes are for pediatri patients requires involvement of the family in order to be suessful. Young hildren do not have the ognitive ability to master diabetes management, and teens often do not possess the emotional maturity to sustain the tasks of daily therapy. Although health are delivery varies by system and aess, in the pediatri health are setting, visits tend to be family-foused, holisti, and entered on management approahes that fit diabetes into the hild and family s lifestyle. Diabetes visits and management approahes inlude parents/guardians as well as the youth. In adult are, the fous is more on the autonomously funtioning individual patient, who an be informed or ounseled but then is expeted to make his/her own hoies about behavior or treatments. Adult visits tend to be substantially shorter and foused on medial problems. Adult patients hoose who they do and do not want to have aess to their health information and are largely onsidered independent onsumers of health are. Whereas individuals hange gradually from hildhood to adulthood, the hange in health are provider an be abrupt and unsettling, suggesting that a more gradual transition may be preferable. Poor ontrol of glyemia and other risk fators There remains a onsiderable gap between the reommended glyemi ontrol levels and the levels atually ahieved in linial pratie, espeially for older teens and young adults. The SEARCH for Diabetes in Youth study showed that only 32% of youth with type 1 diabetes aged years and 18% of those aged $19 years ahieved ADA-reommended A1C targets (17). On the other hand, National Health and Nutrition Examination Survey data reveal that 56% of adults ahieve target A1C values of,7% (18). The greatest proportion of youth with type 1 or type 2 diabetes in poor glyemi ontrol (A1C $9.5%) were teenagers; one of every four patients aged.12 years had suh elevated A1C levels (17). Others have doumented poor glyemi ontrol during the older teen and young adult years (19,20). Those in the poorest glyemi ontrol are at high risk for both aute ompliations and hroni mirovasular ompliations (20,21). The prevalene of ardiovasular risk fators is muh greater in youth with type 2 versus type 1 diabetes, regardless of ethniity (22). However, as the general obesity rates among all U.S. hildren and adolesents inrease, youth with type 1 diabetes have experiened similarly inreasing rates and may have additional ardiovasular 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 hildren and adolesents with type 2 diabetes (22,24,25). Elevated lipid levels in youth with type 1 diabetes appear to be related to level of glyemi ontrol (26). The rates of hypertension in hildren and adolesents with diabetes ompared with those without diabetes are largely related to overweight or obesity status. Fatty liver disease is also more ommon among obese hildren with insulin resistane and diabetes, may preede 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 adolesents, but the disease an progress to irrhosis and death. These risk fators need to be addressed in the adolesent and transitioning young adult. Loss to follow-up The ompeting distrations of young adult life often interfere with the requirements of suessful diabetes management, inluding the need to maintain onsistent medial are. Transitioning older teens and young adults are at high risk for disengagement from health are and, in turn, the emergene of ompliations that may go undeteted without appropriate follow-up diabetes are and sreening. There are adverse short-term (hypoglyemia, hyperglyemia, or diabeti ketoaidosis [DKA]) and long-term (nephropathy and retinopathy) outomes when patients with diabetes are lost to follow-up or have infrequent enounters (21,28,29). Rates of hospitalization and emergeny use and osts of are are higher when glyemi ontrol is poor (21). Glyemi ontrol and diabetes outomes are also poorer when patients do not understand or partiipate in their are. The relative risk of death is higher for young adults with diabetes than for those without diabetes (30). Lapses in are or loss to follow-up aounts for some of these adverse outomes of transitioning older teens and young adults (31 33). Older teens and young adults with diabetes, espeially those from raial/ethni minority or low soioeonomi status bakgrounds, require inreased aess to are in order to maintain ontinuity and oordination of multidisiplinary support and to reeive ongoing self-management support. Continuous follow-up helps redue the need for ostly, aute hospitalizations and provides for early intervention of hroni ompliations to optimize longterm health outomes and funtioning. Inreased risk for aute ompliations A variety of fators may inrease the risk of hypoglyemia and severe hyperglyemia or DKA in transitioning youth, inluding loss of parental supervision of diabetes are and redued attendane at diabetes medial visits. The hallenges of work and/or shool often take preedene over diabetes are. Other lifestyle hanges may inlude inreases in alohol onsumption, hanges in physial ativity levels, varying motivation for self-are (as emerging young adults separate from parents), and differing dietary patterns from a more ontrolled family-home environment. Although data are laking on the inidene of severe hypoglyemia and DKA during the early transition years, in the Diabetes Control and Compliations Trial (DCCT) adolesents aged years at study entry and are.diabetesjournals.org DIABETES CARE, VOLUME 34, NOVEMBER

5 Position Statement years at study s end had a higher rate of severe hypoglyemia than adults (34). Rates of DKA in older adolesents are assoiated with nonadherene and poorer glyemi ontrol (35). Reent studies of ontinuous gluose monitoring (CGM) have assessed rates of overnight hypoglyemia in individuals aged years, with noturnal hypoglyemia doumented during 8.8% of nights (36). Real-time CGM and sensoraugmented pumps have the potential to redue the inidene of hypoglyemi events while improving A1C in those with type 1 diabetes, although poor adherene regarding onsistent CGM usage during the adolesent and young adult years has been a major limiting fator (37). Psyhosoial issues Psyhosoial hallenges are ommon during emerging adulthood, our more often in those with diabetes ompared with those without diabetes, and our more ommonly during emerging adulthood than during other stages of life. Living with diabetes often brings with it a broad range of diabetes-related distresses. Diabetes-speifi stressors that our frequently and interfere with effetive selfare inlude not having lear and onrete goals for diabetes are; feeling disouraged and overwhelmed with the diabetes regimen; unomfortable interations onerning diabetes with family, friends, or oworkers who do not have diabetes; feelings of guilt or anxiety about getting off trak with diabetes self-are; and worrying about the future and the possibility of serious ompliations (38). Anxiety disorders, the most frequently diagnosed psyhiatri disorder in the general population, an ompliate living with and self-management of diabetes, for example when fear of injetions triggers pani attaks, when symptoms of anxiety are onfused with hypoglyemia, or when anxiety about hypoglyemia beomes unmanageable. Depression or the presene of depressive symptoms is a well-known omorbid ondition for individuals with diabetes. In addition to being a barrier to effetive diabetes self-management, depression is linked to poor glyemi ontrol (39) and diabetes ompliations (40). In adolesents with diabetes, inluding 18- to 20- year-olds, 15 33% report depressive symptoms (41,42), while 23 35% of emerging adults (18 28 years of age) with diabetes do so (43). Reent data from the Treatment Options for type 2 Diabetes in Adolesents and Youth (TODAY) study doument similar levels of depressive symptoms in adolesents with type 2 diabetes, with rates of linially signifiant depressive symptoms exeeding 20% in older adolesent females (44). In addition, depressive symptoms were inversely assoiated with quality of life. Reognizing the trajetories of depressive symptoms to worsen and impat physial and psyhosoial well-being as older teens transition into young adulthood, it is important to monitor and refer older adolesents and young adults with type 1 or type 2 diabetes to appropriate mental health resoures. Adolesent and postadolesent young women with diabetes have 2.4 times the risk of developing an eating disorder than age-mathed women without diabetes (45). Although disordered eating behaviors our in both sexes, they are muh more ommon in women than men. About 30% of all women taking insulin struggle with sublinial symptoms of disordered eating, suh as restritive eating, a preoupation with weight and shape, feelings of guilt after eating, and strategi misuse of insulin for weight ontrol (46). Up to 60% are trying to lose weight with unhealthy weight ontrol behaviors (47), with some studies showing as many as 57% of adolesents and young adults involved in the partiularly unhealthy weight ontrol behavior of intentional insulin mismanagement (48 50). One survey of 11,855 Minnesota students attending 2-year and 4-year olleges or universities revealed that about twie as many students with type 1 diabetes had been diagnosed with anorexia or bulimia ompared with students without type 1 diabetes (overall survey results at data on type 1 diabetes not displayed). Clinially diagnosable eating disorders suh as anorexia and bulimia as well as sublinial disordered eating attitudes and behaviors present a serious health risk to the emerging adult with diabetes. Disordered eating is assoiated with poor metaboli ontrol, redued adherene, depression, inreased risk of DKA, and inreased rates of mirovasular ompliations in women with diabetes (20). Severe eating disorders, espeially anorexia nervosa and purging through insulin omission, are life threatening, and suh patients may require hospitalization on an inpatient eating disorders unit experiened in taking are of patients with type 1 diabetes. Disordered eating is not exlusive to youth with type 1 diabetes; 6% of a large ohort of adolesents with type 2 diabetes had linial and 20% had sublinial levels of binge eating behaviors assoiated with more extreme obesity, global eating disorders, depressive symptoms, and poorer quality of life (51). In summary, eating disorders and affetive disorders are espeially serious in emerging adults who have diabetes beause insulin omission, depression, anxiety, and fear of hypoglyemia interfere with diabetes self-are behavior during a time when these patients may have fallen between the raks of the pediatri and adult health are systems. Moreover, longitudinal ohort studies have revealed that there is a subgroup of adolesents with serious mental health and behavior problems who ontinue to deteriorate as they enter their 20s, often with onset of mirovasular ompliations and early mortality. Cliniians who are for emerging adults with type 1 diabetes need to evaluate the mental as well as the physial health history of their new patients and foster aess to mental health providers for onsultation and ollaborative are for the diagnosis and treatment of eating disorders, depression, anxiety, and fear of hypoglyemia. The same priniples hold for individuals with type 2 diabetes, although there are fewer published reports. Beause the TODAY study is a longitudinal study of adolesents 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 reprodutive health issues There is no reason to expet that emerging adults with diabetes will behave differently than their peers with respet to the potential for unintended pregnanies and aquisition of sexually transmitted infetions. Thus, sexual behavior and reprodutive health are important areas for disussion by both pediatri and adult are providers, even when the many medial issues related to diabetes and its ompliations tend to take preedene, delegating these issues to a seondary status. Contraeption needs to be addressed with adolesents and young women with diabetesdeven more so than in women without diabetesdbeause of the need for reprodutive planning in order to 2480 DIABETES CARE, VOLUME 34, NOVEMBER 2011 are.diabetesjournals.org

6 Peters, Laffel, and the Amerian Diabetes Assoiation Transitions Working Group avoid unplanned pregnanies and maximize the outomes of diabeti pregnanies. Contraeptive use to prevent pregnany is lower among adults with diabetes aged years; 39% of those with diabetes were not urrent users of ontraeption ompared with 27% of adults without diabetes (52). Among teens aged years with diabetes, only 16% reported using birth ontrol and, among those ever sexually ative, 67% had ever used birth ontrol (53). An inreasing number of young women with preexisting diabetes are beoming pregnant and delivering babies (54). Given that the highest pregnany and birth rates our in the 18- to 30-year-old age range, the importane of preoneption ounseling and are for individuals with type 1 and type 2 diabetes is lear. Fewer than one in four young women aged years with diabetes were aware of maternal and fetal risks of pregnany and of the need for good glyemi ontrol in order to oneive and give birth to a healthy hild (55). Although preoneption are is often not a routine part of ongoing diabetes are, the development of a reprodutive health plan as suggested by the Centers for Disease Control and Prevention Selet Panel on Preoneption Care is essential ( mmwrhtml/rr5506a1.htm). Alohol, smoking, and drug abuse Emerging adults with diabetes may risk their health by involvement in behaviors suh as drinking alohol and smoking igarettes. Among samples of adolesents and emerging adults with diabetes, alohol and tobao use seem equivalent to rates in those without diabetes. Alohol use worsens glyemi ontrol (56) and is a known risk fator for severe hypoglyemia, while igarette smoking inreases ardiovasular risk and risk for miroalbuminuria among adolesents and emerging adults with diabetes (57,58). Involvement in these and other high-risk behaviors suh as drug abuse plaes these youth at risk for immediate and long-term diabetes ompliations. In addition, suh high-risk behaviors impinge upon the safety of the older adolesent and young adult who is beginning to drive. Risks of these behaviors as well as the risks assoiated with hypoglyemia while driving should be disussed. Abstinene from alohol and substane use while driving should be diretly disussed, and appropriate blood gluose monitoring along with prevention and treatment of hypoglyemia before and during driving should be established. Emergene of signs of hroni diabetes ompliations Rates of linially apparent diabetes ompliations are low in adolesents, although there is evidene of early mirovasular ompliations. About 10% of adolesents with type 1 diabetes have miroalbuminuria (59), whereas ;30% of teens with type 2 diabetes have miroalbuminuria (27); the SEARCH study has verified a threefold higher rate of miroalbuminuria in youth with type 2 ompared with those with type 1 diabetes (60). Higher rates of miroalbuminuria and hypertension are seen in youth with type 2 than youth with type 1 diabetes, despite the fat 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 ommon than among teens with type 2 diabetes (61); data are forthoming from the TODAY study regarding the rates of retinopathy among teens and young adults with type 2 diabetes to supplement the modest data urrently available. When neuropathy testing is performed, ;20% of adolesents with diabetes have evidene of peripheral sensory polyneuropathy and/or findings of autonomi neuropathy (61). The beginnings of atherosleroti disease our in hildren and adolesents (62). Risk fators suh as elevated LDL holesterol level, redued HDL holesterol level, smoking, and higher A1C levels were assoiated with fatty streaks and raised intimal lesions in autopsy studies. Preditors of abnormal vessels in the Bogalusa Heart Study inluded high BMI, high total and LDL holesterol, elevated triglyerides, and high systoli and diastoli blood pressure (63). Therefore, risk fators similar to those identified in older individuals impat the development of atheroslerosis in adolesents and young adults. The presene of diabetes is assoiated with elevated arotid artery intima-media thikness, stiffer blood vessels independent of lipids, and higher levels of inflammatory markers ompared with nondiabeti individuals (64,65). Although pediatriians treat diabetes ompliations infrequently, adult physiians follow guidelines that are speifially written to address the ompliations of diabetes. Adult guidelines are often based on data from older adults, usually with type 2 diabetes; therefore, their appliation to younger individuals with type 1 diabetes needs to be individualized. Nonetheless, disussion of diabetesrelated ompliations and preparation of the transitioning older teen or young adult for hanges in are praties should our prior to transition. APPROACHES TO IMPROVE TRANSITIONS IN CARE Previously published approahes on transitioning older teens and emerging adults with diabetes Teens and young adults require assistane with transition beause they are a vulnerable population at risk for loss to followup are and poor health outomes. One transferred out of pediatri are, published reports provide evidene of gaps in follow-up are with a derease in physiian visits after transfer (32,33,66). Patients with fragmented follow-up are demonstrated poorer glyemi ontrol and a higher rate of hospitalization (67). Therefore, the goal of transition programs is to fous on easing the transfer proess from pediatri to adult are providers. There is substantial interest in identifying effetive ways to transition older teens and young adults with diabetes to adult are providers. Muh of the published literature on the topi desribes observational studies or unontrolled programs, and there are no published, empirially tested, randomized ontrolled trials of validated transition programs. Studies using patient interviews, questionnaire responses, or fous group disussions indiate that young adults desribe time as a major hallenge to maintaining ontat with the diabetes health are team following transfer. Some reports have suggested evening hours or flexible linis. Others have suggested a longer visit as the initial meeting with the adult provider, the provision of speial lini times that fous exlusively on teens to young adults up to age 30 years, and the need to provide the transitioning patient with written information regarding the transfer proess and the new physiian. This information is in addition to the medial summary of the patient s past diabetes health are that should be provided to the reeiving physiian. Most of these studies have substantial limitations beause they reflet small sample sizes and partiular health are delivery systems (32,66,68,69). A reently published systemati review of the transition between pediatri and adult are identified only 10 studies aross a spetrum of hroni diseases of hildhood that evaluated partiular are.diabetesjournals.org DIABETES CARE, VOLUME 34, NOVEMBER

7 Position Statement interventions and assoiated outomes (70). Of these studies, eight inluded patients with diabetes, one inluded patients with ysti fibrosis, and one inluded organ transplant reipients. The interventions targeted either the patient through eduation and skills training, staff through identifiation of oordinators or ombined pediatri and adult team members, or delivered servies through the reation of separate young adult linis or enhaned after-hours phone support. While six of the studies reported improvements in either glyemi ontrol, the ourrene of ompliations, or rates of follow-up visits and sreening proedures, study methodologies varied, with only two studies using a ontrolled, omparison group design. Indeed, reent reommendations for the transition from pediatri to adult are for patients with ysti fibrosis fous on the preparation of the pediatri are providers, the training and availability of adult are providers versed in ysti fibrosis management, and assessment of transition readiness of pediatri patients and families rather than on empiri studies (71). Models of transition are There are a few published reports of transition are models that have been established in the U.K., Spain, Australia, and Canada. The U.K. model evaluated different systems varying from transfer to an adult lini or different hospital, transition to a ombination of pediatri and adult are providers, or transfer to a young adult lini within the same pediatri hospital (33). The latter two approahes were assoiated with greater attendane at follow-up visits than the former. Other programs have inluded transition oordinators, sometimes referred to as patient navigators or are ambassadors, and other approahes that foused on transition eduation programs. The eduation programs inluded workshops aimed at preparing the transitioning teen. Some programs inluded monthly visits for the first 3 6 monthsin efforts to redue loss to follow-up, while others used the transition oordinator to shedule and reshedule any missed appointments (31,69). Future efforts need to standardize and empirially evaluate these various approahes with attention to assessing medial as well as psyhosoial outomes of are (1,72). Additionally, there are settings, suh as in family pratie, where are an ontinue uninterrupted throughout the transitioning period. Although there are a few observational studies addressing transitioning youth with type 1 diabetes (69,73), there are essentially no studies on transitioning individuals with type 2 diabetes. Given that the number of youth with type 2 diabetes is inreasing, this is an important area of study. Programs need to be designed and evaluated that identify a transition oordinator (i.e., are ambassador or patient navigator) who reahes out to the transitioning emerging adult using multiple means (phone, mail, , text messaging, soial media, et.) to ensure timely follow-up visits. Another model that needs to be designed and evaluated for older transitioning adolesents is a speial lini in whih both pediatri and adult providers are in attendane. OTHER ORGANIZATIONS RECOMMENDATIONS FOR TRANSITION OF EMERGING ADULTS WITH DIABETESdMany professional organizations have identified the need to provide guidelines to ease the transition from pediatri to adult are, though not speifially for youth with diabetes (1,74). In 2002, the Amerian Aademy of Pediatris, the Amerian Aademy of Family Physiians, and the Amerian College of Physiians Amerian Soiety of Internal Mediine (75) released a poliy statement that noted the goal of an effetive transition plan is to provide developmentally appropriate health are servies that ontinue uninterrupted as the individual moves from adolesene to adulthood. Similarly, in 2003, the Soiety for Adolesent Health and Mediine (76) published a position statement identifying the importane of organized and oordinated transition programs. These position statements along with a reent statement from the Amerian Aademy of Pediatris (77) provide guidelines for the design and implementation of suessful transition programs based upon published studies and expert opinion. Similarly, our ommittee reated reommendations based upon published studies, models of transition aross pediatri hroni diseases suh as ysti fibrosis, published guidelines regarding the urrent reommendations for diabetes are for pediatri and adult patients, and expert opinion. ADA RECOMMENDATIONS FOR CARE TRANSITION OF EMERGING ADULTS WITH DIABETESdThe ADA level-of-evidene grade, as shown in Table 1, is provided in parentheses. 1. Pediatri health are providers, working ollaboratively with the patient and family, should prepare the developing teen for the upoming transition in health are delivery beginning at least 1 year prior to the transfer to adult health are providers, and likely during the early adolesent years. (E) 2. Preparation should inlude a more direted fous on diabetes self-management skills for the teen/emerging adult and his/her parents. There should be a gradual transfer of diabetes are responsibilities to the teen from the parent or guardian. Broadening responsibilities go beyond diabetes management tasks suh as gluose self-monitoring and insulin administration and should inlude sheduling appointments and ensuring a proper supply of mediations and supplies. Diabetes eduation should be redireted to the growing and developing teen rather than foused exlusively on the parents. (E) 3. Preparation should inlude information about the differenes between pediatri and adult providers in their approahes to are, as well as eduation regarding health insurane options and how to maintain overage. (E) 4. The pediatri provider should prepare and provide to both the patient and future adult are provider a written summary that inludes an ative problem list, ompilation of mediations, assessment of diabetes selfare skills, summary of past glyemi ontrol and diabetes related omorbidities, as well as a summary of any mental health problems and referrals during pediatri are. (E) The National Diabetes Eduation Program, a joint program of the Centers for Disease Control and Prevention and the National Institutes of Health, has developed a template that an be helpful ( nih.gov/resoures/presentations/ transition-slides-jg-aae-presentation /index.aspx) Table 1dADA evidene grading system A: Clear or supportive evidene from wellonduted randomized ontrolled trials or meta-analyses that inorporated quality ratings B: Supportive evidene from well-onduted ohort or observational studies C: Supportive evidene from poorly ontrolled or unontrolled studies, or onfliting evidene with the weight of evidene supporting the reommendation E: Expert onsensus or linial experiene 2482 DIABETES CARE, VOLUME 34, NOVEMBER 2011 are.diabetesjournals.org

8 Peters, Laffel, and the Amerian Diabetes Assoiation Transitions Working Group 5. Health are providers need to reognize the vulnerability of emerging adults with diabetes to loss of onsistent health are and diffiulties in adhering to diabetes management due to ompeting psyhosoial, eduational, and voational hanges, leading to deteriorating glyemi ontrol. Both pediatri and adult are providers should assist in providing support and links to resoures that ould benefit the patient. (B) 6. The transferring health are providers should provide emerging adults with speifi referrals to adult are providers versed in the priniples of intensive diabetes management to math the partiular needs of the patients with type 1 or type 2 diabetes. One might onsider reation of a diretory of adult providers with expertise and interest in the are of young adults. (E) 7. The transferring providers should empower the emerging adults with links to resoures that an help them reonnet to are should they beome lost to follow-up. Consideration should be given to assisting the young adult with sheduling the first appointment with the adult are provider within 3 4 months of the final pediatri visit; a are ambassador or patient navigator an aid the transitioning young adult with follow-up to ensure timely visits. (C) 8. Care must be individualized and developmentally appropriate, with an emphasis on adherene to diabetes self-management and onsistent use of gluose-lowering mediations in order to prevent aute and long-term ompliations of diabetes. (B) 9. Emerging adults with diabetes should be evaluated and treated for disordered eating behaviors and affetive disorders. It is important for the diabetes provider to have a mental health referral soure who understands the fundamentals of working with individuals with diabetes. (C) 10. Ongoing visits should our every 3 months for patients taking insulin and every 3 6 months for patients with type 2 diabetes not taking insulin, aording to urrent ADA reommendations. (E) 11. Sreening guidelines for mirovasular and marovasular ompliations in pediatri and adult patients with diabetes should be followed. (B) 12. Assessment of risk for marovasular ompliations should begin in hildhood aording to guidelines for lipid sreening, blood pressure assessment, and weight management. Management of lipids and hypertension should proeed aording to pediatri and adult guidelines. (B) 13. Birth ontrol, pregnany planning and risks, prevention of sexually transmitted illnesses, use of alohol and drugs, smoking, and driving should be disussed with the older teens and the emerging adults by both pediatri and adult providers with an emphasis on the interplay of these issues with diabetes. (E) 14. Both pediatri and adult providers should ensure that their patients with diabetes reeive ongoing primary and preventive health are (usually separate from their ongoing diabetes speialty are) and, ideally, that the emerging adult feels that he/she is reeiving aessible, patient-entered, oordinated, omprehensive, ontinuous, ompassionate, and ulturally effetive are. (E) SUMMARY AND IMPLICATIONSdFor emerging young adults with diabetes, it is partiularly important to reate effetive and translatable proesses for the transition in are from pediatri to adult providers in order to optimize well-being and health for the near term. It is additionally imperative for these young adults to ahieve target glyemi ontrol in order to prevent long-term ompliations and to maximize lifelong funtioning. There are no proven strategies to ahieve these goals, although programs that partiularly target the young adult with diabetes through eduation, skills training, speialty transition linis, or addition of transition oordinators appear to offer promise. Our urrent knowledge regarding this transition proess alls for ongoing and expanding researh initiatives, inluding the ontinued training and identifiation of adult providers versed not only in the medial are but also in the psyhosoial needs of the young adult with diabetes. The next deade should see the emergene of evidene-based strategies that support best pratie for the growing numbers of young adults with type 1 and type 2 diabetes who will be making this important transition. Aknowledgments dthe writing group meeting was supported by an unrestrited grant from the Jonas Brothers Change for the Children Foundation. A.P. urrently serves on the speaker s bureau for Amylin, Lilly, Takeda, and Novo Nordisk and is a onsultant for Amylin, Lilly, and Novo Nordisk. A.P. also partiipated in ad ho speaking engagements and served as a onsultant in 2010 for AstraZenea, Abbott Diabetes Care, Boehringer Ingelheim, Bristol-Myers Squibb, Dexom, Medtroni MiniMed, Merk, Rohe, and sanofi-aventis. L.L. has reeived grant support from Bayer and served as a onsultant for Johnson & Johnson, Lilly, sanofi-aventis, Bristol- Myers Squibb, and Menarini. No other potential onflits of interest relevant to this artile were reported. APPENDIXdMembers of the Amerian Diabetes Assoiation Transitions Working GroupareAnnAlbright,PhD,RD*,Centers for Disease Control and Prevention, Atlanta, Georgia; Barbara Anderson, PhD, Baylor College of Mediine, Houston, Texas; Zahary T. Bloomgarden, MD, Mount Sinai Shool of Mediine, New York, New York; Belinda Childs, ARNP, MN, CDE, BC-AD, Mid-Ameria Diabetes Assoiation, Wihita, Kansas; Edward Ehlinger, MD, MSPH, Boynton Health Servie University of Minnesota (now Commission of Minnesota Department of Publi Health), St. Paul, Minnesota; Kathleen M. Hanna, PhD, RN, Indiana University, Indianapolis, Indiana; Irl B. Hirsh, MD, University of Washington, Seattle, Washington; Marissa Hithok, BSN, RN, University of South Florida, Tampa, Florida; Jean M. Lawrene, SD, MPH, MSSA, Kaiser Permanente Southern California, Pasadena, California; Shannon P. Lyles, BSN, RN, CDE, University of Florida, Jaksonville, Florida; Sue MLaughlin, MOL, BS, RD, CDE, Nebraska Medial Center, Omaha, Nebraska; Gnanagurudasan Prakasam,MD,MRCP,MHA,SutterMedial Center, Saramento, California; Mihael Riddell, PhD, York University, Toronto, Ontario, Canada; Henry Rodriguez, MD, University of South Florida, Tampa, Florida; Jay Shubrook, DO, Ohio University, Athens, Ohio; Janet Silverstein, MD, University of Florida, Jaksonville, Florida; Sue Kirkman, MD, ADA, Alexandria, Virginia; Jennifer Puryear, MPH, ADA, Alexandria, Virginia. *The findings and onlusions mentioned in this artile are those of the author and do not neessarily reflet the offiial position of the Centers for Disease Control and Prevention. Referenes 1. Weissberg-Benhell J, Wolpert H, Anderson BJ. Transitioning from pediatri to adult are: a new approah to the post-adolesent are.diabetesjournals.org DIABETES CARE, VOLUME 34, NOVEMBER

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