Adult Cerebral Palsy Care: Support for an Underserved Population (Podcast)

A cerebral palsy medical home can help ensure care quality after transition from pediatric practice

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Approximately 764,000 people in the U.S. are living with cerebral palsy. And while medical and societal advancements have significantly increased their life expectancy, many adults don’t have access to the comprehensive medical care they need.

“There are basically two aspects to pediatric care [for patients with cerebral palsy]. One is taking care of the problems that present themselves. The second is giving these children the best chance to live a long, productive and fulfilling life,” says physiatrist Francois Bethoux, MD, Chair of Cleveland Clinic’s Department of Physical Medicine and Rehabilitation. “But there seems to be a disconnect when they reach the adult age and transition to adult healthcare.”

In the latest episode of Cleveland Clinic’s Neuro Pathways podcast, Dr. Bethoux discusses how best to serve the often underserved adult cerebral palsy community. He delves into:

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  • The diverse set of symptoms and conditions associated with cerebral palsy
  • Medical issues related to aging with cerebral palsy
  • The importance of a multidisciplinary team, including a care coordinator, to patient care
  • Common drug therapies for spasticity and other symptoms
  • Resources for medical providers, patients and families of people with cerebral palsy
  • Current research on cerebral palsy

Click the podcast player above to listen to the 24-minute episode now, or read on for a short edited excerpt. Check out more Neuro Pathways episodes at clevelandclinic.org/neuropodcast or wherever you get your podcasts.

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Excerpt from the podcast

Podcast host Glen Stevens, DO, PhD: Are there good places for providers and patients alike to find resources?

Dr. Bethoux: There are wonderful community resources. In our area, the most well-known is United Cerebral Palsy. They help a lot of children, families and adults with cerebral palsy find the right providers. They also provide some services, particularly rehabilitation services, but they also serve to facilitate patients’ insertion into the community and help them remain in the community. That’s one example.

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I like to say that any provider can take care of someone with cerebral palsy. There’s no special degree to have. Actually, right now there’s not really special training that is designed specifically for cerebral palsy. Good listening skills, a desire to help, and access to either specialized providers or good literature when needed are plenty to address this.

What we’re trying to promote is a model where there may be a cerebral palsy medical home, if you wish, which could be in a big academic center, realizing it’s not close to everyone. But then we know that there are some physicians and advanced practice providers who have some experience and a keen interest in helping people with cerebral palsy. We can then connect with them and direct patients and families toward them, for example. The same goes with surgeons, etc.

We realize that the services we may provide as a home for cerebral palsy are not the end of it. It may actually just be the beginning. We may see people once and then they will be referred to a provider or their existing provider, who will be provided with some resources. And then we can continue in the promotion of telehealth. If there’s any silver lining to this pandemic, it’s the fact that we’ve all gotten comfortable with providing telehealth services. We can then stay in touch with these individuals remotely, and they can get their care in person with their own providers in their community.