Gregg Michael Talente, MD, remembers well a young patient who nearly fell through the gap between pediatric an adult health care.
The woman was treated for lupus by her pediatrician until age 19 when the doctor moved out of town. When she landed in front of Dr. Talente , it was clear the patient lacked the knowledge and skills to self-manage her condition, he recalled. Dr. Talente and his team, including pharmacists, helped the young woman understand how to administer her medications, provided refill reminders, and counseled her about reproductive health and how other medications could interact with lupus treatment.
“I look at her as a near-miss case,” said Dr. Talente, director of the internal medicine resident clinic at the University of South Carolina, Columbia, who specializes in pediatric-adolescent medicine. “A lot of bad things could have happened to her because her transition was delayed, and she wasn’t prepared. Fortunately, she landed in a place with more resources than a typical adult clinic so we were able to catch up.”
A new national initiative is designed to aid patients such as this during the move from pediatric to adult health care. The Pediatric to Adult Care Transitions Initiative is a collaborative effort by various specialty groups to facilitate more effective transition and transfer of young adults, while providing a framework for pediatricians and adult care providers. The project is under the direction of the American College of Physicians’ (ACP) Council of Subspecialty Societies in conjunction with the Got Transition (GT)/Center for Health Care Transition Improvement, the Society of General Internal Medicine (SGIM), and the Society for Adolescent Health and Medicine. Got Transition is a cooperative project by the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health to improve pediatric-to-adult-care transitions through innovative strategies.
Since the Pediatric to Adult Care Transitions Initiative launched in spring 2015, project leaders have designed a series of disease-specific tools to enable smoother transition of patients. The downloadable tools include a transition readiness assessment, a medical summary/transfer record tool, and a self-care assessment. The guides were adapted from Got Transition’s six core elements of health care transition, developed from joint clinical recommendations by the ACP, the American Academy of Pediatrics, and the American Academy of Family Physicians.
The disease-specific tools are just the beginning, said Carol Greenlee, MD, chair of the Pediatric to Adult Care Transitions Initiative and chair of the ACP’s Council of Subspecialty Societies.
“We don’t want to just have tools on a website, we want to improve the whole process,” she said. “One of our goals is education and implementation. Part of implementation has to include collaboration because you don’t care-coordinate in isolation. You have to care-coordinate not just with the patient and family, but the pediatric and adult care providers need to collaborate.”
A need for better transition
Data show that knowledge and resources are lacking on both the pediatric and adult care side when it comes to transitioning patients from one realm to the other. A 2009 survey by the AAP found that most pediatric practices neither initiate transition planning early in adolescence nor offer transition-support service (AAP News 2009 Nov. Vol. 30). Another study in the Journal of General Internal Medicine found that many adult providers feel unprepared to care for young adults with complex chronic conditions and that in some cases, there is no identified adult primary care or specialty provider to whom care can be transitioned (J Gen Intern Med. 2008 Oct;23[10]:1621-7). Lack of time, inadequate payment, and poor training also have been cited as barriers to successful transition (Pediatrics. 2001 Jul 1. doi: 10.1542/peds.2011-0969).
Poor transitions often lead to negative health outcomes for young adults, said Dr. Patience White, codirector of Got Transition and professor of medicine and pediatrics at George Washington University, Washington. She has co-led the Pediatric to Adult Care Transitions Initiative.
“The quality of care goes down; many [patients] are lost from their care, and they don’t get the kind of care they need,” Dr. White said. “Therefore, they have poor outcomes, and then of course, the cost goes up because they are utilizing emergency rooms or tests are repeated. You’re looking at poor patient experience, poor quality, and increased cost.”
Enter the Pediatric to Adult Care Transitions Initiative. The project was designed with the busy practices of pediatricians and adult care providers in mind, said Dr. Talente, who is past chair of the SGIM Adults with Complex Conditions Originating in Childhood Task Force.
“Everyone is busy, and asking each individual practitioner to develop the systems they need to do this right is not really practical,” he said. “That’s where this project is really helpful, in the sense that it’s attempting to deliver tools and systems to providers that they can use and just adapt, without doing all the work themselves when they’re trying to run their busy practices.”
The initiative’s readiness assessment is a first step toward improving early transition planning, Dr. Greenlee said. The tool allows pediatricians to measure the knowledge and skill level of patients in the years leading to transition age, and enables doctors to fill any gaps before the transfer occurs.
The tool helps physicians gauge “what this young adult needs to know before they go out into the adult world and take on self-management,” she said. “Making sure they know how to fill a prescription, how to take their medications, know signs and symptoms of a crisis – that sort of thing.”
To enable better communication between providers, initiative leaders created the transfer summary, a hand-off outline that includes critical items the receiving clinician should know about the patients, such as information about their conditions, personal interests, or special needs. The third tool launched by the initiative – a self-management assessment – is a resource for adult care providers to measure the patients’ skills and knowledge once they begin adult care.
Overcoming obstacles to transition
The path to smoother patient transitions is not without bumps in the road. Adding time and new tools to physicians’ already heavy workloads can be challenging, Dr. Greenlee said.
“One of the biggest challenges is the time it takes on both sides,” she said. “Here we’re saying, ‘Here’s more to do.’ As a pediatrician, you’re gong to be preparing and educating [patients] in self-management and trying to get the parents engaged. There’s extra work.”
But helping pediatricians understand the bigger picture results – better outcomes, improved quality, lower health care costs – is key to acceptance, according to initiative leaders.
Strengthening communication between pediatric and adult practices also is critical to making the transition tools effective, added Dr. White. Pediatric practices cannot make successful transfers alone.
“The challenges are to find the partnerships that you need to start it, and the next big challenge is the buy-in,” she said. “You’ve got to get your leadership and senior physicians in a practice to agree that this is something they’re going to do. What’s frustrating for families is when different physicians use different modes of this whole process.”
Reimbursement for transition-related care is an ongoing climb, added Dr. Talente. In the past, physicians have struggled to receive payment for certain nonvisit time needed for transitions, he said.
However, Got Transition recently made headway toward improved payment, Dr. White said. Code 99420 now can be used to bill for transition readiness assessments conducted with youth and self-care assessments conducted with young adults. Got Transition and several physician specialty organizations also have developed a payment work group to address transition care codes. Got Transition offers a coding and reimbursement tip sheet to aid doctors in billing for pediatric to adult transitions.
Dr. Greenlee said she hopes that more pediatricians will start using the tools developed by the initiative, and she recommends reviewing the Got Transition website (www.gottransition.org) and considering how to incorporate transition efforts into practices.
“Start with a policy,” she said. “Start thinking about your approach and then make that approach intentional. My advice … is to just start with one step at a time.”
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