In the United States, there are currently more adults living with cerebral palsy than children.
Despite this, the Centers for Disease Control and Prevention still label cerebral palsy as “the most common motor disability in childhood.”
This definition not only ignores cerebral palsy as a lifelong condition but contributes to a lopsided research focus directed only at pediatric care and not care into adulthood and across the lifespan, experts say.
University of Michigan Health’s Mark Peterson, Ph.D., M.S., FACSM, a professor of physical medicine and rehabilitation, has been working to make sure the definition of cerebral palsy is changed so that as more children with cerebral palsy grow to be adults, their care can continue to be consistent.
In a perspective piece published in the New England Journal of Medicine, Peterson lays out the rationale behind this paradigm shift.
Discrepancies in care for cerebral palsy
Adults with cerebral palsy face large gaps in care when they move away from pediatrics, and it’s often described as “falling off a cliff.”
Since cerebral palsy has historically been classified as a pediatric condition, those with cerebral palsy find that there’s a lack of knowledge about how to treat the factors that come with their condition as they age.
“The vast difference in care can leave many adults with cerebral palsy with low confidence that they will be able to receive the care they need or have their concerns heard,” said Peterson.
“As pediatric patients, many living with cerebral palsy may find themselves feeling confident that their questions would have answers and their care needs, such as physical therapy, would always be covered by insurance. When their care transitions to adult providers, many find that their insurance no longer covers their needs, and their providers are unable to answer questions about aspects of their condition that are changing as they age.”
Common risks for adults with cerebral palsy can include the early onset of secondary conditions such as osteoporosis, hypertension, diabetes and psychiatric disorders.
Peterson explains it’s important to address these comorbidities to ensure patients receive proper treatment.
Most standards of care for adults with cerebral palsy are carried over from pediatrics, says Peterson, focusing on individual body parts and addressing issues such as spasticity, joint contractures, pain and musculoskeletal disorders, leaving no standard of care for adults.
“This means that people with cerebral palsy may develop other noncommunicable diseases in early adulthood that can contribute to accelerated aging and premature death,” said Peterson.
Creating a new definition for cerebral palsy
As more children with cerebral palsy grow up to become adults, groups like the Cerebral Palsy Foundation, the Weinberg Family Cerebral Palsy Center, the Cerebral Palsy Research Network and the Cerebral Palsy Alliance Research Foundation have adopted a new definition for cerebral palsy that they hope becomes widely used and accepted.
The new definition defines cerebral palsy as “the most common lifelong physical disability” people can face.
“This new definition acknowledges that cerebral palsy is lifelong and doesn’t end after childhood,” said Peterson.
“Robust operational definitions with language like this help drive accurate research about the correct subject group. There is research needed specifically about adults with cerebral palsy and the impact that this lifelong condition has. Having a more accurate definition helps guide that research.”
Adding that there are unique physical challenges impacting those with cerebral palsy as they age creates opportunities for considering it, and other childhood-onset neurodevelopmental conditions, in studies that focus on adults and include adults with cerebral palsy that may otherwise be excluded.
“Being able to have adults with cerebral palsy participate in more clinical research will contribute immensely to our understanding of the natural history of cerebral palsy as people age,” said Peterson.
“This can range from cerebral palsy specific studies to any study that involves neurodevelopmental conditions. The information that is gathered will help improve the care adults with cerebral palsy receive and better tailor their treatments.”
Clear definitions about cerebral palsy and its lifelong impact also play a crucial role in public health surveillance.
For instance, a proper operational definition from the National Institutes of Health can enable more accurate national surveillance and coordinated responses to health threats by being more specific about how the threat will impact those with cerebral palsy.
These definitions can also inform policy decisions regarding resource allocation, reimbursement, and quality-improvement initiatives, shaping the delivery of healthcare services.
As adults with cerebral palsy age, Peterson explains that many age out of the resources they had covered before when being seen in pediatrics.
Reframing the definition could also help adjust the policies that support and cover care for adults with the disease.
The NIH has reported, roughly, a15% increase in cerebral palsy-related funding since 2017, yet funding for life-course-based initiatives remains insufficient.
“For a long time, the goal of medical advancements with cerebral palsy was to make sure the children with cerebral palsy were able to become healthy adults. Now, it’s time to make sure we are properly treating the adults we worked to care for as children.”