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More than 9 million children in the United States are living with a chronic illness. Every year, 500,000 of these children turn 18. As they join their fellow adolescents in struggling to achieve optimal independence while navigating the often rocky road to adulthood, these children and their families also face a serious issue they may not be prepared for: the transition of their medical care.
"There are a number of barriers in the transition process," explains Niraj Sharma, MD, MPH, program director of the Internal Medicine-Pediatrics Residency at Brigham and Women's Hospital and Children's Hospital Boston. "Patients have had their parents making all their medical decisions, and now they're being seen as independent decision-makers. Parents have built long-term relationships with their pediatricians, and now they have to switch. And, just as pediatric providers may not be used to dealing with issues affecting adults, adult practitioners might not be trained to handle the long-term complications of a childhood illness."
Dr. Sharma works closely with Frances "Kitty" O'Hare, MD, who trained in a combined Internal Medicine-Pediatrics program and treats both adult and pediatric patients at Martha Eliot Health Center (MEHC), a neighborhood health service of Children's. "I wanted to pursue this issue, in particular, because I was struck by how many kids' doctors weren't prepared to handle the transition process," says Dr. O'Hare.
Dr. O'Hare and Dr. Sharma are laying the groundwork for a transition medicine practice at MEHC. "We're also trying to build a program that gets information out into the community," says Dr. Sharma. "We're involved in a number of initiatives—from training practitioners to starting to map out a transition process by the time their patients are 13, to identifying developmentally appropriate ways of building independence, to affecting policy and making key changes in the clinical care environment."
"Transition medicine is emerging as a discipline, but it's not a subspecialty—it touches all aspects of care," says Richard C. Antonelli, MD, MS, medical director of the Children's Hospital Integrated Care Organization. Dr. Antonelli is also a policy expert who, along with Dr. Sharma, advises the National Center for Health Care Transition."There are many issues at play: across communities, between primary and subspecialty care providers, between pediatric and adult providers. There are also issues of vocation and advocacy, and those need to be taken into account, just as a patient's medical issues are."
The surge of medical advances in recent decades has led to a significant uptick in adult survivors of childhood diseases once considered fatal. Children's Boston Adult Congenital Heart Service (BACH) and Complex Care Service (CCS) are the most frequent referral sources for Dr. O'Hare's practice, but her patients represent more than 50 complex diseases.
"The demand is very high. We hear from pediatricians all the time, 'I can't find an adult provider to take my patient.' Finding a PCP is hard enough as it is. It ups the ante if you need a deeper level of care coordination," says Dr. O'Hare.
The number of transitioning patients vastly outweighs the number of dually trained clinicians: there are now approximately 7,000 Med-Peds physicians in the country. What can be done to plug the gap? "It's critical to train internists to deal with transitioning patients," says Dr. Sharma. "But it's also essential that referring pediatricians develop a transition policy for their patients. This is something every primary care provider can do."
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