Transition from Pediatric to Adult Care

​Care Transitions: How the Neuroscience Institute at Children’s Colorado is Improving Patient and Family Experiences

For many neurology patients and their families, transitioning from pediatric care to adult care is a challenge. Many of these patients have spent their entire lives receiving care from the supportive environment of Children’s Hospital Colorado. Moving to an adult hospital setting can be overwhelming and scary for patients and parents alike.

That’s why Jennifer Disabato​, Pediatric Nurse Practitioner, and Assistant Professor in the College of Nursing and School of Medicine, and a team from the Neurology​ department at Children's Hospital Colorado embarked on a quality improvement plan to strengthen the processes surrounding care transitions. In just a few years, the team has reduced the amount of time it takes to properly transition care and is better equipped to address the psycho-social aspects of care transition for these patients and their families.   

The project began in 2010, and first targeted the well-defined population of epilepsy patients. At the time, it was taking six months to a year to transition a pediatric patient to adult care. With the changes implemented by the QI project, this time was reduced to 60-90 days by 2012. Since then, the team has expanded the patient population being served by the project.   

Disabato examined the barriers these patients faced as they transitioned to adult care. Some patients have developmental, intellectual and cognitive deficits that make care transitions difficult.

“Our patients represent a broad range of abilities … our more functional kids may be preparing to go off to college,” says Paul M. Levisohn, MD​, Associate Professor of Pediatrics and Neurology. “Some of our kids require far more complex care and have significant special needs or difficult family situations. We need to be prepared to help all of these kids transition.”

Many patients are overwhelmed by the responsibilities they face as adults.

“In a lot of ways, Children’s functions as a ‘medical home’ for our complex patients,” says Disabato. “We coordinate the care between specialists, something that just doesn’t happen in adult care.”

Financing is also a concern. It’s more difficult to find adult care providers that accept Medicaid as a payer. And many adult neurologists simply don’t accept patients with significant disabilities.

These barriers, and the related gaps in care during this vulnerable developmental juncture, are reasons why many adult-age patients were being seen in the CHCO emergency room to get their critical medications.

With all the barriers neurology patients face in transition, Disabato engaged others in neurology to find ways to improve the processes surrounding care transitions from pediatric to adult neurological care to make the process as robust as possible.

The department began by implementing new transition guidelines​. The guidelines served to educate patients and families, and set expectations for providers. They include a timeline for discussion, planning, preparation and action. The guidelines even prepare pediatric patients to take more responsibility, as appropriate, for managing their care in the years approaching care transfer.

Disabato also helped to implement a streamlined, proactive, team-based approach to integrating tools into the electronic medical record system that support successful care transfers. This included adding transition summary letter templates, a Best Practice Advisory and a modified transition readiness assessment to the electronic health record (EHR). This enhanced team communication has benefitted the patients because of the early, focused support they receive from Laura Hutton, LCSW, the neurology social worker who begins transition planning. 

In addition, the neurology transition team has been working to develop a more formalized process between Children’s and other hospitals, including University of Colorado Hospital (UCH). “It used to be a transfer of records, but now we include a personalized summary letter for each patient to help the referral coordinator at UCH determine the best fit,” says Disabato.

Dr. Levisohn believes a big part of improving care transitions surrounds changing the culture of conversation within your department. “We definitely talk about transitions more,” says Levisohn.

The department has made great strides, but there’s always more work to be done. “The work we are doing continues to evolve and has broad input and support from the MDs, advanced practice providers (APPs), our department social worker, family navigator and nursing,” says Disabato. “This project is a good example of QI, and how process improvements that take time to gain traction can start to build momentum after a few years.”

In the future, Disabato believes the department would all benefit from devoting resources toward a dedicated transition coordinator. In addition, she and her team will continue to evolve the tools they have, including prioritizing their patients through the EHR and working to capture data to understand how well the Best Practice Advisory is working to improve care transitions.