Cerebral palsy (CP) should be reframed as “the most common lifelong physical disability,” instead of a childhood disorder, a professor of physical medicine and rehabilitation argues in a recent perspective article for the New England Journal of Medicine.
Defining cerebral palsy as primarily a paediatric condition contributes to uneven care for adults living with the disability, Mark Peterson, a professor of physical medicine and rehabilitation at University of Michigan Medical School, argues in the essay.
The Centres for Disease Control and Prevention currently refers to CP as “the most common motor disability in childhood”.
But focusing the majority of work on early detection and treatment has skewed awareness of the permanent nature of the disability, Peterson writes. He says it has led to a dearth of data on adults living with cerebral palsy and fosters a misperception that CP occurs only in children.
Colleagues and CP advocacy groups have joined Peterson in using the new definition.
Adults with cerebral palsy are at risk for complications such as mental health disorders, diabetes, cardiovascular disease, osteoporosis and other conditions. In one 2023 study in Brain Sciences, researchers found that adults with CP face limited resources and providers who lack expertise once they transition from adolescence to adulthood, issues that “present significant obstacles” to obtaining care and long-term benefits.
Part of the problem is that there is no agreed-upon standard of care for adults living with cerebral palsy, Peterson adds. The hope is that an expanded definition could prompt additional research and new standards for treating adults with the disability.
“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,” he says in a news release. “Now, it’s time to make sure we are properly treating the adults we worked to care for as children.”
The Washington Post – Why one expert says it’s time to redefine cerebral palsy
New England Medical Journal – Cerebral Palsy (Restricted access)
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