Defining cerebral palsy solely as a condition for children overlooks the significant number of adults who also cope with this disorder.
At present, there are more adults experiencing cerebral palsy than there are children in the United States.
Yet, the Centers for Disease Control and Prevention continues to refer to cerebral palsy as “the most common motor disability in childhood.”
This narrow definition not only fails to recognize cerebral palsy as a lifelong condition but also skews research efforts towards pediatric treatment while neglecting care for adults, according to experts.
Mark Peterson, Ph.D., M.S., FACSM, a professor of physical medicine and rehabilitation at the University of Michigan Health, is actively working to alter this definition. His aim is to ensure that the transition from child to adult care for those with cerebral palsy is seamless and consistent.
In a perspective piece featured in the New England Journal of Medicine, Peterson discusses the need for this shift in perspective.
Care Disparities for Individuals with Cerebral Palsy
Adults living with cerebral palsy often encounter significant gaps in care once they leave pediatric services, a transition that can feel like “falling off a cliff.”
Given that cerebral palsy has primarily been viewed as a childhood condition, many adults discover a lack of understanding regarding the management of their evolving health concerns.
“The stark contrast in care can lead many adults with cerebral palsy to feel uncertain about receiving the help they need or having their concerns taken seriously,” Peterson notes.
“As children, many patients felt assured that their questions would be addressed and that their care needs, such as physical therapy, would always be met by insurance. However, upon transitioning to adult care, many find that their insurance coverage is reduced or their providers are ill-equipped to handle the changes in their condition related to aging.”
Adults with cerebral palsy may also face increased risks for secondary conditions like osteoporosis, hypertension, diabetes, and mental health issues.
Peterson emphasizes the importance of addressing these additional health concerns to ensure comprehensive treatment.
Most care protocols for adults with cerebral palsy are inherited from pediatric practices, focusing on specific body parts and conditions such as spasticity, joint contractures, pain, and musculoskeletal issues, leaving a void in adequate care for adults.
“This results in individuals with cerebral palsy potentially developing other chronic conditions early in adulthood, leading to quicker aging and shorter lifespans,” warns Peterson.
Establishing an Updated Definition for Cerebral Palsy
As more children with cerebral palsy transition into adulthood, organizations such as the Cerebral Palsy Foundation, the Weinberg Family Cerebral Palsy Center, the Cerebral Palsy Research Network, and the Cerebral Palsy Alliance Research Foundation are advocating for a redefined understanding of the condition that they hope will gain widespread acceptance.
The new definition describes cerebral palsy as “the most common lifelong physical disability” faced by individuals.
“This redefinition acknowledges that cerebral palsy persists throughout life and doesn’t simply conclude after childhood,” explains Peterson.
“Establishing robust operational definitions helps enhance research accuracy regarding the relevant populations. There is a critical need for targeted research about the effects of this lifelong condition on adults. A more precise definition can facilitate this research.”
Recognizing the unique physical challenges that adults with cerebral palsy encounter as they age enables considerations for including such groups in research studies that often overlook adult participants.
“The opportunity for adults with cerebral palsy to participate in more clinical studies will significantly enhance our understanding of how the condition evolves over time,” Peterson asserts.
“This could involve research specific to cerebral palsy or wider studies concerning neurodevelopmental conditions. The findings will contribute to improving the care and treatment options for adults with cerebral palsy.”
Clear definitions concerning cerebral palsy and its enduring repercussions are also vital for public health monitoring.
For example, a well-defined operational standard from the National Institutes of Health (NIH) can allow for better national tracking and coordinated responses to health concerns by providing a clearer understanding of how these issues impact those with cerebral palsy.
Such definitions can guide policy decisions surrounding resource distribution, reimbursement structures, and quality improvement efforts, thereby influencing healthcare service delivery.
As adults with cerebral palsy grow older, Peterson notes that many lose access to the resources that were available to them during their pediatric care.
Revising the definition could also help reform policies that support and fund care for adults affected by this condition.
The NIH reported approximately a 15% increase in funding for cerebral palsy since 2017, but funding for initiatives that take a life-span approach remains insufficient.
“For a long time, the priority in cerebral palsy advancements was ensuring that children could develop into healthy adults. Now, it’s essential to ensure that we provide adequate care for the adults we worked so hard to support during childhood.”
