Recommendations for the Transition of “Emerging Adults” With Diabetes From Pediatric to Adult Diabetes Care Systems: New Position Statement Released
October 24, 2011
With the number of children and adolescents diagnosed with diabetes increasing in recent years, more attention must be paid to helping them transition from pediatric health care – in which their treatment is supervised – to adult care, in which they are responsible for managing their own health, according to an American Diabetes Association position statement being published in the November issue of Diabetes Care.
Gaps in health insurance during this transition period, fundamental differences in the way health care is delivered to children and adults, critical developmental issues in this age group, loss of follow-up care, the emergence of chronic complications and a lack of research regarding approaches for treating emerging young adults (ages 18-30) are among the major challenges that need to be addressed, the paper notes.
This first-ever position statement on this topic in diabetes recommends that pediatric health care providers begin preparing adolescents at least one year prior to the transition; that there be a gradual shift to self-management (such as glucose self-monitoring and insulin delivery, along with scheduling appointments and monitoring supplies); that pediatric providers supply transitioning patients with written summaries of care issues and medication lists; that referrals be made to adult providers with experience in intensive management; that special attention be paid to screening for complications, disordered eating behaviors and mental health issues at this time; and that an open discussion of birth control, drug and alcohol use, smoking and sexually transmitted diseases be held, in particular addressing the interplay between these behaviors and living with diabetes.
Each year, tens of thousands of emerging young adults with type 1 or type 2 diabetes are estimated to be transitioning from pediatric to adult health care.
“This is a period of life that is really critical for ensuring continuity of care, given how many changes in lifestyle young adults are going through as they enter college, move out of their parents’ household or begin supporting themselves,” said Anne Peters, MD, CDE, co-chair of the American Diabetes Association’s Transitions Working Group, and Professor, Keck School of Medicine of USC. “But until now, it has not received the attention it deserves. We are concerned that with such large numbers of young people developing diabetes in recent years, failure to address their special treatment concerns could lead to a major public health problem.”
The 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. In 2001, SEARCH estimated that there were approximately 154,000 youth under the age of 20 years with diabetes while in 2010, the estimated number of youth with diabetes was 215,000, representing 0.26 percent of persons in this age group.
“The statement emphasizes the special but changing role that the family must play during the transitional period as well,” said Lori Laffel, MD, MPH, the Transitions Working Group’s other co-chair. Laffel added that, "While there is a need for more research to help improve care and outcomes for emerging young adults during their transitions from pediatric to adult diabetes care, this statement was created by a multi-disciplinary group of diabetes experts who utilized the literature as well as expert consensus to create the recommendations."
The group included pediatric and adult endocrinologists, primary care providers, diabetes nurse educators, dietitians, exercise experts, mental health professionals, college health providers, young and older adult patients who have transitioned and family members.
“During this stage of adolescent development, there is a need for ongoing family involvement in diabetes management in order to reduce the risk of deterioration in glycemic control that often accompanies adolescence,” the statement says. It defines the transitional period as 18-30 years because: “In contrast to the views of traditional developmental psychology, contemporary thinking is that young adulthood does not immediately follow adolescence, but begins when youth are in their late twenties or early thirties.”
Worldwide, the prevalence of type 1 diabetes in children and young adults has doubled in the past 25 years and is expected to double again in the next 15-20 years. The epidemic of childhood obesity has led to an increased incidence of type 2 diabetes in children and teenagers.
The SEARCH for Diabetes in Youth study showed that only 32 percent of youth with type 1 diabetes aged 13-18 years and 18 percent of those aged 19+ years achieved ADA-recommended A1C targets. In comparison, the NHANES study shows 56 percent of adults achieve target A1C values of <7 percent. The greatest proportion of youth with type 1 or type 2 diabetes in poor glycemic control (A1C >9.5%) were teenagers; 1 of every 4 patients >12 years old had such elevated A1C levels.
The American Diabetes Association’s Transitions Working Group included representation from 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).
Diabetes Care, published by the American Diabetes Association, is the leading peer-reviewed journal of clinical research into one of the nation’s leading causes of death by disease. Diabetes also is a leading cause of heart disease and stroke, as well as the leading cause of adult blindness, kidney failure, and non-traumatic amputations.
The American Diabetes Association is leading the fight to Stop Diabetes and its deadly consequences and fighting for those affected by diabetes. The Association funds research to prevent, cure and manage diabetes; delivers services to hundreds of communities; provides objective and credible information; and gives voice to those denied their rights because of diabetes. Founded in 1940, our mission is to prevent and cure diabetes and to improve the lives of all people affected by diabetes.
For more information please call the American Diabetes Association at 1-800-DIABETES (800-342-2383) or visit www.diabetes.org. Information from both these sources is available in English and Spanish.