ADA青少年成人糖尿病护理过渡期指南

Diabetes Care for Emerging Adults: Recommendations for Transition From Pediatric to Adult Diabetes Care Systems A position statement of the American Diabetes Association, with representation by the American College of Osteopathic Family Physicians, the American Academy of Pediatrics, the American Association of Clinical Endocrinologists, the American Osteopathic Association, the Centers for Disease Control and Prevention, Children with Diabetes, The Endocrine Society, the International Society for Pediatric and Adolescent Diabetes, Juvenile Diabetes Research Foundation International, the National Diabetes Education Program, and the Pediatric Endocrine Society (formerly Lawson Wilkins Pediatric Endocrine Society) ANNE PETERS, MD, CDE1 LORI LAFFEL, MD, MPH2 THE AMERICAN DIABETES ASSOCIATION TRANSITIONS WORKING GROUP* During childhood and adolescence,there is a gradual shift from diabetescare supervised by parents and other adults to self-care management. The ac- tual change from pediatric to adult health care providers signals a more abrupt change that requires preparation by pa- tients, their families, and their health care providers. A number of publications from the U.S. and other countries have highlighted substantial gaps in care dur- ing this transition period between pediat- ric and adult care that often arise in later adolescence and the subsequent develop- mental stage of life termed “emerging adulthood.” This is a critical time when patients not only assume responsibility for their diabetes self-care and interactions with the health care system but when they become more independent, potentially moving out of their parents’ home to attend college or to join the workforce (1). In the context of these transitions and the devel- opmental issues of this age-group, gaps in diabetes care can result in suboptimal health care utilization, deteriorating glyce- mic control, increased occurrence of acute complications, emergence of chronic com- plications of diabetes that may go unde- tected or untreated, and psychosocial, behavioral, and emotional challenges. With the increasing incidence of both type 1 and type 2 diabetes in childhood, adoles- cence, and young adulthood, there is an in- crease in the absolute numbers of youth with diabetes in this transition period, highlighting the need for a framework of care and education for this population and a call for additional research in this area. Substantial challenges relating to the transitional period include the following: c The dearth of empirical evidence on the best approaches to the transition process c Fundamental differences in health care delivery between pediatric and adult health care providers c Lack of well-defined criteria for de- termination of transition readiness c The changing social and demographic characteristics of young adults that may influence their utilization of health care c Gaps in health insurance during this transitional period c Differences in learning styles between in- dividuals in this transition period com- pared with both younger children and adults beyond the period of emerging adulthood c Deficiencies in training of health care professionals in care delivery for emerg- ing adults with diabetes Most of the limited evidence base has focused on transitions in care for youth with type 1 diabetes. The recent emergence of type 2 diabetes in children and teenagers highlights an absolute deficiency of studies on transitioning youth with type 2 diabetes from pediatric to adult care (2). Although some medical and psychosocial issues may be different between these groups of youth withdiabetes,manyare assumed tobe similar. c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c c From the 1University of Southern California Keck School of Medicine, Los Angeles, California; and the 2Joslin Diabetes Center, Harvard Medical School, Boston, Massachusetts. Corresponding author: Lori Laffel, lori.laffel@joslin.harvard.edu. DOI: 10.2337/dc11-1723 *A complete list of the members of the American Diabetes Association Transitions Working Group can be found in the APPENDIX. This position statement was peer-reviewed by members of the Professional Practice Committee in July 2011 and approved by the Executive Committee of the Board of Directors of the AmericanDiabetes Association in August 2011. ©2011 by the AmericanDiabetes Association. Readersmay use this article as long as thework is properly cited, the use is educational and not for profit, and the work is not altered. See http://creativecommons.org/ licenses/by-nc-nd/3.0/ for details. care.diabetesjournals.org DIABETES CARE, VOLUME 34, NOVEMBER 2011 2477 R e v i e w s / C o m m e n t a r i e s / A D A S t a t e m e n t s P O S I T I O N S T A T E M E N T In March 2010, the American Diabe- tes Association (ADA) convened a multi- disciplinary group of experts and people with diabetes (see APPENDIX for organiza- tions and individuals) to review the issues that confront both youth and young adults with diabetes and health care pro- fessionals during this critical transition process from pediatric to adult care. The issues that need to be considered to un- derstand the process of transition were described and discussed. This resulting statement provides a framework for health care delivery during the transition period and an agenda for future research. 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 esti- mated number of youth with diabetes was 215,000, representing 0.26% of individu- als in this age-group (5). Worldwide, the prevalence of type 1 diabetes in children and young adults has doubled in the past 25 years and is expected to double yet again in the next 15–20 years, a phenomenon not observed several decades ago (6,7). The epidemic of childhood obesity has lead to an increased incidence of type 2 diabetes being diag- nosed in children and teenagers (8). Type 2 diabetes remains relatively uncommon in children under age 10 years, with the majority of cases identified in youth dur- ing the 2nd decade of life and affecting predominantly those from racial and/or ethnic minority groups, namely American Indians, blacks, Hispanics, Asians, and Pacific Islanders (9–13). Furthermore, al- though the incidence of type 1 diabetes de- clines toward the middle to the late 2nd decade of life (age 15–19 years) from the peak rates observed during puberty in early adolescence, the incidence of type 2 diabe- tes continues to increase with age. There are limited epidemiological data that span the age range from late adolescence through young adulthood (18–30 years of age), although there are data that pre- cede and follow this key developmental period. The SEARCH study provides prevalence estimates for 15- to 19-year- olds in various racial and ethnic popula- tions (9–13). Prevalence 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-Hispanic whites, while the preva- lence of type 2 diabetes ranges from 0.29 (non-Hispanic whites) to 2.36 (Navajo) per 1,000. In a survey of 11,855 young adults (41% response rate), ages 18–29 years, at- tending 2-year and 4-year postsecondary educational institutions in Minnesota, 0.55% of students reported having a diag- nosis of type 1 diabetes (E. Ehlinger, per- sonal communication). The size of the young adult popula- tionwith diabetes is difficult to knowwith certainty. The overall numbers of chil- dren, adolescents, and young adults with diabetes in the U.S. in 2007was estimated at close to a million in a study of diabetes costs including the age-groups ,18 and 18–34 (14). Given the current estimates of the prevalence of diabetes in youth, one can expect that each year there are tens of thousands of emerging young adults with type 1 or type 2 diabetes who will be tran- sitioning from pediatric to adult care. EMERGING ADULTHOODdFor the purposes of this statement, we have chosen to focus on the age range of 18–30 years. The preceding period of adolescent growth and development is a stage of tre- mendous physical, social, and emotional change that challenges diabetes manage- ment for both youth and health care pro- viders. During this stage of adolescent development, there is a need for ongoing family involvement in diabetes manage- ment in order to reduce the risk of dete- rioration in glycemic control that often accompanies adolescence (15). In contrast to the views of traditional developmental psychology, contemporary thinking is that young adulthood does not immediately follow adolescence, but be- gins when youth are in their late 20s or early 30s and that the developmental stage between ages ;l8 and 30 years defines a period called emerging adulthood (16). Re- cent cultural trends in America suggest that young people in their 20s delay assuming adult roleswith respect tomarriage, parent- ing, andwork comparedwith young adults in earlier generations. Contemporary de- velopmental theorist J.J. Arnett (16) sug- gests that the postadolescent period is subdivided into an early phase correspond- ing to the years immediately after high school (;18–24 years) and a later phase when more traditional adult roles are as- sumed (;25–30 years). Thinking about the postadolescent period as consisting of two phases provides a valuable framework when considering diabetes management and may help to ensure that the clinician’s approach and focus are appropriately matched to the emerging adult’s life cir- cumstances and readiness to become an ac- tive participant in his/her own diabetes management. During the early phase of emerging adulthood, the person may be transition- ing geographically, economically, and emotionally away from the parental home. Competing academic, economic, and so- cial priorities often detract from a focused commitment to chronic disease manage- ment. Even as young adults face these competing demands, most do not believe that they have achieved all of the skills necessary to remain independent and ac- cept these responsibilities on their own (16). Therefore, it may be unrealistic to expect the person with diabetes in the first phase of emerging adulthood to make ma- jor changes in their diabetes management strategies, or even to transition to a new adult diabetes health care provider. Con- versely, for many this early phase is marked by feelings of invulnerability and a tendency to reject adult control, which may further limit receptiveness to recommendations for diabetes treatment. During the second phase of the young adult period, the 25- to 30-year-old often has a maturing sense of identity and as- sumes adult-like roles in society, such 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 accompa- nied by a growing recognition of the im- portance of striving for better glycemic control and receptiveness to improving self-care behavior. Life partners can be important supports and agents for change, and a shared sense of investment in the future will often catalyze this change in self-care behavior. This period, when life- long patterns of behavior are likely es- tablished, can be a critical window of opportunity for health care interventions. ISSUES IN THE TRANSITION BETWEEN PEDIATRIC AND ADULT DIABETES CAREdThe 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 subse- quent provider. There are also multiple 2478 DIABETES CARE, VOLUME 34, NOVEMBER 2011 care.diabetesjournals.org Position Statement psychosocial adjustments during the postadolescent period of emerging adult- hood 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 Account- able 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: differ- ences between pediatric and adult care, poor glycemic control, loss to follow-up care, acute complications, psychosocial is- sues, 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. Di- abetes 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 man- agement, and teens often donot possess the emotional maturity to sustain the tasks of daily therapy. Although health care deliv- ery 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 pa- tient, 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 infor- mation and are largely considered indepen- dent consumers of health care. Whereas individuals change gradually from child- hood 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, Na- tional Health and Nutrition Examination Survey data reveal that 56% of adults ach- ieve target A1C values of ,7% (18). The greatest proportion of youth with type 1 or type 2 diabetes in poor glycemic con- trol (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 (19,20). Those in the poorest glyce- mic control are at high risk for both acute complications and chronic microvascular complications (20,21). 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 simi- larly increasing rates and may have addi- tional cardiovascular risk, partly as a result of the suboptimal diets reported in youth with either type 1 or type 2 di- abetes (23). Studies show higher rates of dyslipidemia in obese children and ado- lescents with type 2 diabetes (22,24,25). Elevated lipid levels in youth with type 1 diabetes appear to be related to level of glycemic control (26). The rates of hyper- tension in children and adolescents with diabetes comparedwith those without di- abetes 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 diabe- tes, and has also been linked to type 1 di- abetes (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, in- cluding the need to maintain consistent medical care. Transitioning older teens and young adults are at high risk for disen- gagement fromhealth 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, hyper- glycemia, or diabetic ketoacidosis [DKA]) and long-term (nephropathy and retinop- athy) outcomes when patients with diabe- tes are lost to follow-up or have infrequent encounters (21,28,29). Rates of hospitali- zation and emergency use and costs of care are higher when glycemic control is poor (21). Glycemic control and diabetes out- comes 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 (31–33). Older teens and young adults with diabe- tes, 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 re- duce the need for costly, acute hospitaliza- tions 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 med- ical 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 motiva- tion 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) adoles- cents aged 13–17 years at study entry and care.diabetesjournals.org DIABETES CARE, VOLUME 34, NOVEMBER 2011 2479 Peters, Laffel, and the American Diabetes Association Transitions Working Group 20–24 years at study’s end had a higher rate of severe hypoglycemia than adults (34). Rates of DKA in older adolescents are asso- ciated with nonadherence and poorer gly- cemic control (35). Recent studies of continuous glucose monitoring (CGM) have assessed rates of overnight hypoglycemia in individuals aged 15–24 years, with nocturnal hypo- glycemia documented during