New toolkits help young adults navigate shift from pediatric to adult health care

For young adults who have been diagnosed with a chronic condition like Type 1 diabetes or growth hormone deficiency, health concerns can add a degree of difficulty to transitions like leaving for college or living alone for the first time.

The new Transitions of Care initiative spearheaded by the Endocrine Society provides interactive toolkits to help young adults who have hormone conditions navigate the shift from a pediatric to an adult health care team. The Society partnered with several health care organizations on the initiative, which offers resources for young adults, their parents and health care providers.

"The transition isn't simply a matter of finding an adult health care provider and transferring some files," said Alan D. Rogol, MD, PhD, a member of the Transitions of Care Task Force. "At this stage in their lives, young adults who have chronic conditions are often learning to manage their disease without parental support. It is important for health care providers to understand their concerns and needs to help patients make the transition."

The toolkits include assessments to help young adults and their health care providers assess how ready patients are to independently manage their care and to identify patients' biggest worries.

Toolkits with specific guidance for people with Type 1 diabetes and growth hormone deficiency are available at www.endocrinetransitions.org. The Type 1 diabetes toolkit incorporates links to fact sheets on various challenges facing young adults with the condition, such as managing diabetes safely in the workplace and in a college setting.

The initiative plans to develop additional resources for people who have been diagnosed with childhood cancers, Turner Syndrome and congenital adrenal hyperplasia, a genetic disorder of the adrenal glands.

The toolkits also feature referral forms for pediatric and adult health care providers to share information about a patient's medical history. While the actual transfer may be marked by the patient's first visit to the adult care team, significant communication must take place between the pediatric and adult care providers to ensure a smooth transition. The Transitions of Care initiative provides the resources pediatric practices need to prepare young adults for the move to a new provider. The toolkits also include information to help adult health care providers plan for the first appointment and ensure they have detailed information about the new patient.

"For young adults who have longstanding relationships with pediatric care providers, the new and old health care teams want to ensure all the relevant details about the patient's history and condition are handed off," Rogol said. "Improved coordination among the health care professionals lightens the burden on the patient and helps them grow comfortable with the new care team."

Participants in the Transitions of Care initiative include the Endocrine Society, the Pediatric Endocrine Society, the American Diabetes Association, the American Association of Diabetes Educators, JDRF, the International Society for Pediatric and Adolescent Diabetes, the Hormone Health Network, the American Academy of Pediatrics and the American College of Physicians. The program is supported by educational grants from Lilly USA, LLC, Medtronic Diabetes and Novo Nordisk Inc.