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ACP releases toolkit for transitioning young adults with chronic conditions to adult care settings

WASHINGTON — The American College of Physicians, in collaboration with numerous other medical organizations, has developed guidelines and tools to aid physicians in the transition of patients with chronic diseases from pediatric to adult care settings.

ACP announced the initiative at a press briefing held at the annual ACP Internal Medicine Meeting as a step towards standardizing approaches to transition in both primary care and subspecialty practices.

Carol Greenlee, MD, FACP, chair of the initiative and co-chair of ACP's Council of Subspecialty Societies (CSS) explained the need for the project in the release.

"The bottom line is there's a huge patient need in this area," she said. "There's a lot of patients in this transition group. If we just look at 18- to 21-year-olds, often called the emerging adult years, there's 18 million and at least 25% of them have some sort of chronic condition that will go with them into adulthood. However, if we expand that to between 16 and 30, because they're often still transitioning in that age group, it's many, many millions more."

Greenlee continued: "The problem is that the transition now doesn't really occur in any standardized way or systematic way... the youth are coming out of pediatric care not knowing what's wrong with them, not knowing about their condition, not able to explain what treatments they've had or what surgeries or why, not understanding their medications."

She explained that because of a lack of care, particularly preventive care, in this population, many with chronic illnesses will experience unnecessary hospitalizations due to overutilizing emergency departments and acquire unnecessary complications.

"There are lots of gaps and lacks in that transition," Greenlee said. "Any time we're trying to coordinate care, we need information, communication and collaboration. And so these tools that we've developed are intended to improve all of three of those."

The initiative was driven by CSS, along with Got Transition/Center for Health Care Transition Improvement, Society for Adolescent Health and Medicine and Society of General Internal Medicine.

Got Transition/Center for Health Care Transition developed an evidence-based model of elements for health care transitions based on joint clinical recommendations from ACP, the American Academy of Family Physicians and the American Academy of Pediatrics.

The tools include customized worksheets on readiness assessments, transfer summaries and self-care assessments for patients with chronic care conditions, such as hemophilia, diabetes, physical disabilities and intellectual/developmental disabilities. The worksheets ask the patients and their caregivers specifics about their conditions and how they manage them.

Patience White, MD, co-director of Got Transition/Center for Health Care Transition Improvement, also noted that physicians were excited about the toolkits for other reasons.

"The research is pretty clear that patient experience isn't good during this transition, that there is increased cost and there is also a decreased quality of care," she said. "We've been excited to be a part of this project. I'm getting such great feedback that this decreases the work that the physicians need to do. There's a lot of burden out there with paperwork and things and what we've done is actually create the tools that customize them and allow them to use them in their practices."

The American Society of Hematology (ASH) released a statement about the toolkit it collaborated with the ACP to produce.

"Transitioning from pediatric to adult health care practices is often a challenge for patients with chronic medical issues, because it can be difficult to adhere to a treatment regimen or attend regular appointments without the assistance of a parent or guardian," Charles S. Abrams, MD, ASH president, said in the release. "ASH recognizes that understanding a patient's preparedness to take control of his or her medical condition in adulthood can make a huge difference in quality of care, which is why we are pleased to join the American College of Physicians and partner societies in this important initiative."

ASH developed three groups of resources: forms for patients with any hematologic conditions, forms for patients with hemophilia and forms for patients with sickle cell disease. The forms include clinical summaries and transition readiness assessments.

Wayne J. Riley, MD, MPH, MBA, MACP, ACP president, praised the timeliness of the guidelines, the collaboration of more than two-dozen health care groups and the initiative's continuance of ACP's High Value Care Coordination Project. – by Chelsea Frajerman Pardes