Comprehensive Care and Research Needs in Cerebral Palsy (CP)
This article was written by Dr. Mindy Aisen, Neurologist and CP Expert. Dr. Aisen serves as a National Adviser to Children’s Cerebral Palsy Movement.
Definition of CP:
CP is the most common neurological disorder resulting in motor disability of childhood. CP is defined as acquired brain injury (due to a variety of causes) before the age of 2 years, resulting in motor impairment. It occurs in 3.5 out of every 1000 live births, and is “viewed as an incurable condition of early childhood with static deficits” that are known to persist into adulthood. Nearly one million children and adults in the US have CP.
Despite its prevalence, there has been scant research to study optimal management of CP across the lifespan. Research funds for clinical interventions to enhance motor skills have been ever-decreasing since 2008, in spite of the fact that research dollars directed at other developmental and motor disorders has been on the rise.
Although CP has no cure, there are many promising treatments. Emerging research demonstrates the potential of capitalizing on the innate plasticity of the human brain (principally through intensive and engaging task specific practice). Enhancing motor recovery and preventing complications can greatly enhance quality of life for those with CP. However, without available funding, these treatments cannot be proven.
If lack of funding persists, the net result is that these individuals age out of the system at age 18 and are less likely to be independent and gainfully employed, while at the same time experiencing decreased mobility, increased pain and chronic complications.
A Call to Action:
Advocacy for greater research stands to change the lives of hundreds of thousands of children and adults with CP.
Over the next months I shall discuss research needs and clinical issues that face many children and adults with CP (and their families).
Some of these clinical issues include the
primary complications of CP (i. e., those due to brain damage), some of which are present in all people with CP, and some are not:
- Movement Disorders
- Learning Impairments
- Attention/Behavioral Impairments
Secondary Complications (i.e. the medical/surgical complications that occur in some as a result of chronic neurological impairment:
- Limb length discrepancies
- Joint deformities/tendon contractures
- Respiratory impairment
- Dental complications
Tertiary Complications (i.e. the psycho-social, participation impairments which must be addressed and minimized)
- Inequality in educational opportunities
- Ultimately, inequality in employment opportunities
- Social Isolation/Depression
To learn more about Cerebral Palsy or to stay connected with our community, please follow Children’s Cerebral Palsy Movement on Facebook.
About Dr. Mindy Aisen:
Dr. Mindy Aisen is a graduate of the Massachusetts Institute of Technology, where she studied mechanical engineering. As an undergraduate she designed a therapeutic toy for children with neurological impairment, which was commercialized and ultimately placed in the MIT museum. It was that experience that led her to a career in neurology and neurological rehabilitation. She graduated from the Columbia University of Physicians and surgeons and completed her Neurology residency training at New York Hospital/Cornell. She joined the faculty of Cornell Medical School and served as Chief of Spinal Cord Injury at the affiliated Burke Rehabilitation Center. Other key positions in her career have included serving as the President of the American Society of Neurological Rehabilitation, National Chief of Rehabilitation Research and Development for the Department of Veterans Affairs, and Medical Director of the United Cerebral Palsy Research and Educational Foundation (UCPREF). She currently holds the postions of Chief Innovation and Research Officer at Rancho Los Amigos National Rehabilitation Center and Clinical Professor of Neurology at USC-Keck School of Medicine.
During her years at the UCPREF she gained a broad and deep understanding about the needs of the CP Community and gaps in evidence for guiding most effective care. She also happens to have a nephew with CP, and has intimate knowledge about the impact of CP on the family.
Her blog will explore clinical care, research needs, and specific roles of medical care that require a new approach for helping children and adults with CP have long, contented, and productive lives