A new word is catching on to describe the sometimes overwhelming life stage of learning to behave like a grown-up: “adulting.” For youth with chronic diseases, adulting has complexities beyond coming to grips with doing their own laundry. They must transition to a new system of adult-centered medical care, which can be daunting.
Several changes converge as adolescents age out of the pediatric health system. They may be graduating high school, moving out on their own, making their own medical and legal decisions independently, choosing insurance coverage, and encountering changing eligibilities and covered services for federal programs such as Medicaid. In the midst of this flux, it is not uncommon for young adults with chronic conditions to have lapses in medication, supplies, and physician visits.
“Most children with chronic diseases get very excellent care as children,” said Sophia Jan, MD, who is a pediatrician for children with special healthcare needs at Children’s Hospital of Philadelphia and a general internist at the University of Pennsylvania Health System. “They’re reaching their potential, meeting life milestones, and living into adulthood. But what typically happens when they turn 18 or 21 is that they fall off a cliff of medical and other services. Many young adults with chronic disease have a very difficult time during this transition from pediatric care to adult care.”
Dr. Jan, who also is an associate program director of the Combined Internal Medicine-Pediatrics Residency Program and a faculty member of CHOP’s PolicyLab, has seen too many patients teetering on this cliff. With the help of funding from the Health Resources & Services Administration, Dr. Jan along with co-principal investigators David Rubin, MD, MSCE, PolicyLab director, and Lawrence Brown, MD, a CHOP pediatric neurologist, will lead a quality improvement study team to implement a bundle of programs and interventions to safely transition this vulnerable population, focusing on those with epilepsy, to adult care. The transition interventions are based on a set of guidelines that Dr. Brown developed along with a panel of experts convened by the Child Neurology Foundation that serve as a blueprint to help clinicians transition children with a variety of neurologic conditions, taking into account that they also may concurrently have intellectual disabilities that affect their decision-making.
“We’re seeing how we can implement these guidelines in real-world settings,” Dr. Jan said. “This project is probably one of the largest implementations of transition-related interventions at a large free-standing children’s hospital and a separate large adult medical center.”
They will partner with the University of Pennsylvania Health System to build a learning collaborative with seven clinical sites (two CHOP pediatric neurology practices, two CHOP primary care practices, two Penn adult neurology practices, and a Penn adult neurology practice) that will collect data to assess the ongoing effectiveness of the interventions. The project, Improving Access to Care and Transition Services for Children and Youth With Epilepsy in Eastern Pennsylvania (I-ACT for Epilepsy), is expected to reach 1,000 children and youth living with epilepsy in the catchment areas of CHOP and the University of Pennsylvania Health System.
The study aims to help patients like a young woman with epilepsy and cerebral palsy who Dr. Jan met for the first time, without having any background on her previous medical history. She was nonverbal, used a feeding tube, and was dependent on her grandmother for all aspects of her daily living. In order to be seen in Dr. Jan’s adult practice at Penn, the young woman needed to change insurance, and her family was scrambling to get new medical suppliers and nursing care services in place. Most worrisome, at the time, was that she didn’t have a clear plan on how she was going to continue receiving her regular botox injections to treat her spasticity. Dr. Jan acted immediately to redo all of her prior authorizations and letters of medical necessity to avoid any lapses in services or medications that could lead to a potentially dangerous situation for her new patient.
Ideally, the components of I-ACT for Epilepsy will smooth out some of those issues. The study team is working to create a registry of patients with epilepsy so that they can better track their access to care and quality measures around transitions of care. They are building the infrastructure to integrate that information into the electronic medical records at CHOP and Penn.
A full suite of clinician decision support tools also will be available to facilitate transition best practices and discussions about shifting care from pediatric to adult providers. For example, an alert will prompt pediatric providers to select patient/family education sheets about transition topics. Checking another box will recommend a consult with a social worker.
“It’s a way to break all the parts of transition into small chunks to make it more feasible and less overwhelming from the standpoint of providers,” Dr. Jan said. “Instead of being crisis driven, let’s proactively think about what issues a patient who is 16 or 17 is going to face in the next 12 months in order to safely transition their care to adult providers in a different system.”
Another part of the intervention bundle is assessing patients’ transition readiness so that the study team can pinpoint which basic competencies patients might need the most help with. Do they know what medications they take and how often? Do they know who to call in an emergency? Do they know how to set up a medical appointment? A youth community health worker who has epilepsy will be recruited from one of the adult care practices participating in the study to work with a select group of patients to help them develop these specific efficacy skills and troubleshoot navigating the adult healthcare system.
The study team also is working to standardize a transition summary document that will inform adult care physicians in advance about a complex patient’s most important active medical issues so that they can accommodate the extra time and attention that they’ll need when they assume their care. They will implement new clinical pathways, some that may be shared between CHOP and Penn, to streamline some of the communication barriers that historically happen between pediatric and adult hospitals.
Several of these strategies already have been pilot tested by CHOP’s Multidisciplinary Intervention Navigation Team (MINT) for Pediatric to Adult Medical System Transitions that Dr. Jan coordinates along with attending physician Dava Szalda, MD; nurse practitioner Adam Greenberg; social workers Symme Trachtenberg and Caren Steinway; and youth community health worker Katie Wu. MINT is deployed to help transition CHOP’s most complex patients to Penn. It is a project funded by the Department of Pediatrics’ Chair’s Initiative at CHOP, which is a program that provides funding to support special projects to establish new models of care in pediatrics.
Even with some of the groundwork done, I-ACT is an ambitious project. Among its goals is to increase by 50 percent the number of children and youth with epilepsy served by the clinical sites who have a youth transition plan in place. While I-ACT focuses on epilepsy, Dr. Jan points out that the lessons they learn will be applicable across programs who help young adults with other chronic diseases transition to adult services.
“If we can show that we can improve transitions of care between two large hospital systems with these particular tools and use metrics that are measurable through their electronic medical records, then we will have both a clinical process and suite of tool sets that will be a good model for other institutions to potentially use to improve transitions of care,” Dr. Jan said.