When you turn 18, life can change overnight. At 18, you can apply for a credit card, register to vote, and sign your own legal documents asserting that you are officially an adult in charge of your own care. It might even be time to head off to college, or enlist in the military. But turning 18 also means it’s time to leave behind the only doctor you may have ever known – your pediatrician – and find a new adult doctor. During your visits you might be expected to know information about insurance coverage, your family’s medical history, or your previous vaccinations – it’s a process which can be confusing even for the healthiest of patients. But for the patients who rely heavily on their care teams for continued treatment and assistance with chronic diseases, the transition from pediatric to adult care can be downright overwhelming.
Easing the transition from pediatric to adult care for adolescents with chronic gastrointestinal diseases and disorders is the main goal behind the unique CHOP-Penn Transition Program and Center for Digestive, Liver and Pancreatic Medicine. Co-founded by doctors at both Penn Medicine and the Children’s Hospital of Philadelphia (CHOP), the program aims to provide adolescent patients with personalized support, educational tools and guidance that empowers them to take control of their care with confidence.
“Research shows that there’s a lapse in health care for patients right around 18-years-old,” said Anil Rustgi, MD, chief of Gastroenterology at the Perelman School of Medicine at the University of Pennsylvania. “What we hope to do for patients by providing personal guidance is to create a seamless transition from their pediatric to adult gastroenterologist.”
Anne Grant, the program’s Transition Nurse Practitioner (TNP), works one-on-one with patients and their new adult specialist to make sure there is a solid personality match and a full transfer of the patient’s medical history. As a family nurse practitioner with experience in adolescent/young adult medicine, Grant assists patients every step of the way to make sure that they feel comfortable in making decisions about their care.
While other transition programs at Penn Medicine help patients to bridge the gap between pediatric and adult care, the CHOP-Penn Transition Program (CPTP) is the first of its kind to be co-founded by and directly linked with CHOP faculty and administration. With an estimated 500 patients aged 18 years and older receiving pediatric care at CHOP for Inflammatory Bowel Disease (IBD) alone, clinicians saw a clear need for a structured program to ease the transition.
Approved for organization in 2007, the program has an integrated and unified approach in research, clinical care and training for residents and physicians. At the onset, program leaders conducted focus groups with patients and their families to determine the priority goals.
“We heard a lot of people saying that they were comfortable with their pediatric care team because they’d been with them for so long – in some cases for their whole lives,” said Alison Marx, administrative director of Gastroenterology and Nutrition, CHOP. “For a lot of our patients, finding an adult physician who was a good personality match was just as important as understanding the insurance process, or communicating about their disease. We realized we needed someone who could help them with the transition from CHOP to Penn.”
Since its founding, the program has experienced remarkable success in retaining patients, improving patient satisfaction and reducing stress for both patients and care teams. So far, the program has successfully transitioned nearly 200 patients from CHOP to Penn Medicine, and currently refers an average of five patients per month to the program.
“We’re seeing a more efficient process of transitioning patients with fewer duplicated efforts and, more importantly, a higher quality of care for the patient,” said Grant. “Without these programs, doctors don’t have a complete working knowledge of patient cases, so you end up with a lot of patients who might not know their complete medical history suddenly having all these questions to answer about their treatment and past care. It can create a lot of extra work for the physicians and a lot of added stress for the patients.”
Grant, who attends meetings with both the patient’s pediatric and adult physicians to transition health care records, also helps adolescent patients better understand transition procedures and communicate effectively about their disease so they can make safe choices in the future. Patients are also encouraged to use online resources available from the CPTP including videos from other young adults with chronic illnesses, tips on how to make the transition to adulthood with a chronic illness as smooth as possible, and referrals for out-of-town doctors for those patients who are travelling or moving away to college.
“There’s a difference between transitioning and transferring information and patients,” said Rustgi. “We want to create relationships with these new patients by transitioning them and their families so they get to know us. This is an exciting time for these young adults. By encouraging them to be involved with their care, we create a relationship that we can build on in the future. We’re also learning about each patient’s case and helping patients to feel comfortable in a time when most might not know where to even begin with choosing a new specialist.”
The CPTP includes adult and pediatric gastroenterologists, hepatologists, and other healthcare providers from CHOP and Penn Medicine who work to transition patients with IBD (Ulcerative Colitis, Crohn’s Disease), Eosinophilic Esophagitis, Celiac Sprue and other nutritional disorders, obesity and liver diseases. The program is dedicated to furthering discovery in these areas and has received funding from the NIH for future research in translational medicine. In addition to providing patients/family education, the program also provides a platform for training students, residents, fellows and other medical professionals in the realm of transitional medicine.
For more information on the program and to see more transition videos with helpful tips from patients, doctors and nurse practitioners, please visit the CHOP-Penn Transition Program home page.