Most people living with cerebral palsy today are adults, yet there is a disconnect about how childhood neurological care should transition into adulthood. Today, Dr. Bhooma Aravamuthan, MD, DPhil, shares her efforts to bridge that gap…
As a pediatric neurologist, the bulk of my practice is caring for children with cerebral palsy, yet I did not receive training in the unique needs and concerns of adults with the condition.
As my patients make the often-difficult transition away from pediatric care to adult care, what medical symptoms and red flags do I tell them to watch out for? How can I help them advocate for their medical needs? How do I convince my adult neurologist colleagues that CP is not just something that happens to kids? These kids become adults, and they still need us.
Last year, I was elected as Vice-Chair of the American Academy of Neurology (AAN) Adults with Intellectual and Developmental Disabilities Section. My election was bolstered after I sounded the alarm that neurologists who care for adults should increase their focus on patients with CP. I am not alone in my passion for this topic, and there is a growing consensus that we need more expertise.
As I investigated this issue, I turned to the Cerebral Palsy Research Network and engaged with The Adults with Cerebral Palsy Workgroup within the network.
The workgroup features clinicians across specialties (including physiatry, physical therapy, developmental pediatrics, and orthopedics) who have long worked to increase awareness of the many changing needs faced by adults with CP.
I came to them asking, “Where do I start?” Together, we established what we knew, what we thought we knew, and what we needed to learn more about regarding the neurologic care of adults with CP. Along with a talented MD-PhD student at my home institution, Washington University School of Medicine, we conducted a comprehensive systematic review of the available literature on neurologic concerns faced by adults with CP.
The results were informative but also sobering. Adults with CP have twice the risk of stroke and eight times the risk of myelopathy (spinal cord compression and injury) than adults without CP. A third of adults with CP lose mobility as they age, and the majority suffer from increasing pain and fatigue. These are all concerns that require neurologic surveillance, which, by and large, is not occurring. We also established how much we still need to learn about the neurologic problems faced by adults with CP. As you may have guessed, there is still a lot we do not know.
Together with my neurologist colleagues, members of the AAN section, and members of the CP Research Network workgroup, we published our findings. Our article, Adults with cerebral palsy require ongoing neurologic care: A systematic review, was printed in this month’s Annals of Neurology, one of the flagship journals in our field.
In the article, we include recommendations for clinicians, researchers, and adults with CP about the kinds of neurologic symptoms to look for and what symptoms we need to learn more about.
We believe that resources of this type are an essential step toward ensuring adult medical practitioners are more aware of the issues facing adults with CP. Our findings highlight the critical need for ongoing neurologic surveillance of adults with CP.
At the least, we hope that including specific recommendations for adults with CP will empower patients to self-advocate until we, as clinicians, can bridge the wider knowledge gap we have regarding their care.
As word spreads of our recommendations, we have been encouraged by the positive feedback but are eagerly awaiting to see if this changes practice as well. While we are hopeful, we are not naïve. We will keep sounding the alarm until ongoing neurologic surveillance of adults with CP is the norm.
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About Dr Bhooma Aravamuthan
Dr. Aravamuthan is an Assistant Professor of Neurology and pediatric movement disorders specialist in the Cerebral Palsy Center at the Washington University School of Medicine in St. Louis.