The Missing Links: The Need for Transitional CP Care

Throughout the United States, children’s hospitals have extensive experience treating kids with cerebral palsy and similar neuromotor disabilities. However, when these patients turn 18, their care options dwindle and other complications associated with aging arise. Weinberg Family Cerebral Palsy Center (WFCPC) Executive Director David Roye, MD has made it imperative to be on the forefront of transitional CP care and research.

Decades of Care

Since he joined the Columbia Orthopedics faculty in 1980, Dr. Roye has been treating patients with cerebral palsy throughout the age range. Cerebral palsy affects 4 out of every 1,000 live births but it is a lifelong condition. The same opportunities for treatment aren’t available for most adults with CP. Years before the WFCPC was fully formed, he was thinking of creating a transitional CP care program that would include providers throughout the NewYork-Presbyterian Hospital system.

“I was frustrated by my inability to treat them holistically,” said Dr. Roye. “I’m comfortable treating adults but there are things I don’t do like total joint replacements or hand surgery. And, in addition to orthopedics, these patients need experts in every medical field who understand cerebral palsy.”

Even though there are more transitional CP care opportunities today than thirty years ago, patients still travel across the country to see him. World-renowned institutions have had difficulty providing comprehensive care for adult patients with CP.

“They have plenty of spine surgeons at some hospitals but no one understood what we understand,” said Dr. Roye. “For example, cervical spinal stenosis is eight times more common in patients with cerebral palsy and it occurs a decade or two earlier.”

Doctors Training Doctors

While educating the public about CP is important, Dr. Roye has another group in mind he wants to teach – his colleagues. Many adult providers rarely see patients with CP but, when they do, they have numerous challenges in treating them. If they’re prescribed the wrong type or dosage of medication, their underlying condition might have unknown comorbidities that could lead to serious complications. Orthopedists are one of the few surgical specialists that have extensive experience treating children and adults. This gives them more flexibility and are ideal for caring for patients throughout the lifespan.

“We’re trained as adult providers and then you do a year of pediatrics at the end,” said Dr. Roye. “It also helps that there’s a particular configuration at Columbia University Medical Center that allows me to walk out of the children’s hospital and walk through the hallways to the adult hospital. This way, I can provide care seamlessly in both environments.”

As part of the WFCPC’s mission, Dr. Roye has trained colleagues in other medical specialties and convinced them that treating patients with CP is a worthwhile population to subspecialize in. WFCPC hosts about two courses each year that trains general practitioners and subspecialty providers in CP treatment. This training has been a boon to the WFCPC, allowing more providers in more specialties to understand the needs of aging patients with CP and neuromotor disabilities and the unique challenges they have. One result from Dr. Roye’s encouragement and training is the work of psychiatrist Dr. Daniel Linhares, whose research has led to three groundbreaking studies, presented at the American Psychiatric Association in October.

“If you look at the adult providers we have trained up, they’re now comfortable seeing a patient with cerebral palsy who’s 25 or 41,” said Dr. Roye.

The Benefits of Research

A dearth of data and peer-reviewed studies on adults is impeding many of these advances in traditional CP care. To fix this, the WFCPC is conducting numerous research projects. One of the key tools researchers at the WFCPC have built to support this research is a CP patient registry. This will provide researchers with data on common issues that affect patients with different types of CP. Currently, the registry has nearly 6,000 people on it with an approximately 50/50 split in children and adults.

“Supporting the establishment of a registry housed within the university was a major part of the Weinberg’s gift to the center,” said Dr. Roye. “It has been an incredible tool for conducting research that offers tangible positive impact for our patients, and it’s going to be very important for the future of the center.”

One exciting, and largely unexplored, avenue of research for the Weinberg CP Center is the relationship between CP and genetics.  Dr. Roye is particularly passionate about the potential to use advanced gene sequencing technology, alongside data from the WFCPC’s registry, to help identify gene variants that are associated with cerebral palsy.

“Advances in precision medicine, many of which are being pioneered here at Columbia, can help us to better understand how genetic mutations may pre-dispose someone to abnormal brain development, or a neonatal brain insult,” said Dr. Roye. “Our team is incredibly enthusiastic about the potential to answer some of the fundamental questions about the underlying causes of CP.”

Seamless Transitional CP Care

Ultimately, these initiatives provide seamless care that make transitioning to adulthood and other lifespan milestones effortless. The rapid growth of the WFCPC has helped this long held dream of Dr. Roye become a reality.

“I’m getting more and more comfortable that I’m going to have a legacy of care and research and education for cerebral palsy that will long outlive my career,” said Dr. Roye.