ADA Guidelines Address Youth–Adult Diabetes Care Transition

Laurie Barclay, MD

October 27, 2011

October 27, 2011 — To optimize well-being, health, and glycemic control, and to prevent long-term complications, patients with diabetes need effective strategies to transition from pediatric to adult providers, according to an American Diabetes Association (ADA) position statement published in the November issue of Diabetes Care. The transitional period is defined as between 18 and 30 years of age, because current thinking is that young adulthood does not immediately follow adolescence, but begins in the late 20s or early 30s.

"Improving the transition and ensuring optimal diabetes care for emerging adults has for several years been a key topic for healthcare specialists in diabetes," Carine de Beaufort, MD, PhD, a consultant in pediatric diabetes and endocrinology at Diabetes & Endocrine Care Clinique Pédiatrique, Luxembourg, and a research associate at Luxembourg Centre for Systems Biomedicine, Université du Luxembourg, told Medscape Medical News when asked for independent comment. "Age limits imposed by clinic structure in some places throughout the world may impose an acute transition at a fixed age. From my experience and the available evidence, this is definitely not the best way to accompany emerging adults to their next phase of self-management."

"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," Anne Peters, MD, CDE, cochair of the ADA's Transitions Working Group and professor at the University of Southern California Keck School of Medicine in Los Angeles, said in a news release. "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 transition from pediatric to adult healthcare occurs in tens of thousands of emerging young adults with type 1 or type 2 diabetes annually. Findings of the SEARCH for Diabetes in Youth Study suggest that the number of youth younger than 20 years with diabetes increased from about 154,000 in 2001 to about 215,000 in 2010, or approximately 0.26% of persons in this age group. However, only 32% of youth aged 13 to 18 years with type 1 diabetes and 18% of those aged 19 years or more met A1C targets recommended by the ADA.

"Despite the existence of established guidelines, clinicians at both sides of the age spectrum — adult and pediatric/adolescent — are still frequently confronted with problems appearing around this phase," Dr. de Beaufort said. "Even centers with great experience and interest in optimizing this transition still report considerable numbers of dropouts, with the risk that these emerging adults will reappear in the healthcare system with either acute or chronic complications. Some pediatric centers have decided to continue care of the patient with diabetes from 0 to 100 years, but this may not be the best solution long-term."

Strategies for Effective Care Transitions

Promising, but still unproven, strategies to ensure effective care transitions include programs that target the young adult with diabetes through education, skills training, specialty transition clinics, and management by transition coordinators. The position statement says that ongoing research is needed to assess the efficacy of these strategies. Clinicians need to be trained in both the psychosocial and medical care of the young adult with diabetes.

"The statement emphasizes the special but changing role that the family must play during the transitional period as well," said ADA Transitions Working Group Cochair Lori Laffel, MD, MPH, from the Joslin Diabetes Center at Harvard Medical School in Boston, Massachusetts, in the news release. "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."

Challenges to be addressed during the transition period include gaps in health insurance and in follow-up, differences in pediatric and adult healthcare delivery, critical developmental issues, emergence of chronic complications, and a lack of research regarding optimal approaches for treating adults aged 18 to 30 years.

"The family and patient need to develop skills and knowledge to ensure independence and self-management, but of course the clinicians need to be trained as well to harmonize the message given, even if their words and approach are different," Dr. de Beaufort said. "There may be huge differences between pediatric teams and adult teams."

Pediatric teams tend to be family oriented and paternalistic, whereas adult teams tend to assign more responsibility to the patient. Other differences may include an individualized vs group management approach, as well as differences in use of technology, devices, and sensors.

"Regular meetings between the pediatric and adult teams may help identify concordance or discordance in their diabetes management, may reduce the differences, and may lead to better transition acceptability," Dr. de Beaufort noted. "This approach has been started in some regions in Japan and seems to have a very positive impact on the collaboration. A case manager approach has proven efficacy in some studies and, although expensive, may prove long-term to be cost-neutral or better by preventing acute complications and irreversible micro- or macroangiopathic complications."

Specific ADA Recommendations for Youth–Adult Care Transition

  1. At least 1 year before the transfer to adult healthcare providers, and probably during the early adolescent years, pediatric healthcare providers should collaborate with the patient and family to prepare for the upcoming transition in healthcare delivery.

  2. This preparation should include a sharper focus on diabetes self-management skills, with gradual transfer of diabetes care responsibilities to the teenager from the parent or caregiver. The teenager should receive diabetes education and assume broader responsibilities including scheduling appointments and ensuring adequate stock of medications and supplies.

  3. The teenager should be educated regarding differences in care approaches between pediatric and adult providers, and regarding health insurance options and how to maintain coverage.

  4. The pediatric provider should prepare a written summary including an active problem list, medication list, diabetes self-care skills evaluation, summary of past glycemic control and diabetes-related comorbidities, summary of any mental health problems, and referrals during pediatric care. This should be given both to the patient and to the adult provider who will assume care.

  5. Healthcare providers should be aware that emerging adults with diabetes are vulnerable to loss of consistent healthcare. Furthermore, emerging adults may have problems adhering to diabetes management because of new psychosocial, educational, and vocational challenges, which may hinder glycemic control. Pediatric and adult care providers both should offer support and referrals to resources that may assist the patient.

  6. Emerging adults should be referred to specific adult care providers who are expert in intensive diabetes management and who will be a good fit to the patient's specific needs, including diabetes type.

  7. The transferring clinicians should provide emerging adults with links to resources that can help them reestablish care in case they become lost to follow-up. It may be helpful to schedule the first appointment with the adult care provider within 3 to 4 months of the final pediatric visit. A care ambassador or patient navigator can assist the transitioning young adult with obtaining timely follow-up visits.

  8. Diabetes self-management care must be individualized and developmentally appropriate. To prevent acute and long-term complications of diabetes, adherence to and consistent use of glucose-lowering medications must be emphasized.

  9. Emerging adults with diabetes should be assessed and treated for disordered eating behaviors and affective disorders, with referral as needed to a mental health provider familiar with diabetes care.

  10. Current ADA recommendations are for follow-up visits every 3 months for patients taking insulin and every 3 to 6 months for patients with type 2 diabetes who are not taking insulin.

  11. Providers should follow screening guidelines for microvascular and macrovascular complications in pediatric and adult patients with diabetes.

  12. Risk evaluation for macrovascular complications should start in childhood, based on guidelines for lipid screening, blood pressure determination, and weight management. Pediatric and adult guidelines should be followed for management of hyperlipidemia and hypertension.

  13. Pediatric and adult clinicians should discuss birth control, pregnancy planning and risks, prevention of sexually transmitted illnesses, alcohol and drug use, smoking, and driving with older teenagers and emerging adults. The discussion should emphasize how diabetes affects these issues.

  14. Pediatric and adult clinicians should make sure that their diabetic patients receive ongoing primary and preventive healthcare. This is generally separate from their ongoing diabetes specialty care. The goal is for emerging adults to perceive that their care is accessible, patient-centered, coordinated, comprehensive, continuous, compassionate, and culturally effective.

Other societies participating in the development of these guidelines were 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).

The Jonas Brothers' Change for the Children Foundation supported the writing group meeting. Dr. Peters reports various financial relationships with Amylin, Lilly, Takeda, Novo Nordisk, AstraZeneca, Abbott Diabetes Care, Boehringer Ingelheim, Bristol-Myers Squibb, Dexcom, Medtronic MiniMed, Merck, Roche, and sanofi-aventis. Dr. Laffel has received grant support from Bayer and served as a consultant for Johnson & Johnson, Lilly, sanofi-aventis, Bristol-Myers Squibb, and Menarini. The authors have disclosed no other relevant financial relationships.

Diabetes Care. 2011;34:2477-2485. Full text

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