We must reframe how cerebral palsy is viewed for better health outcomes

Globally, there are approximately 17 million people with cerebral palsy. Cerebral palsy is the name given to group of permanent movement disorders that appear in early childhood. Often, symptoms include poor co-ordination, stiff or weak muscles, involuntary jerking movements and impairments to speech, vision or sensation. 

In the United States, there are about 764,000 children and adults with cerebral palsy, according to Cerebral Palsy Guidance. About 500,000 children under the age of 18 currently have Cerebral Palsy. Around 10,000 babies are born each year with cerebral palsy, based on prevalence rates from the Centers for Disease Control and Prevention.

Historically, cerebral palsy was considered a pediatric condition. However, thanks to modern medicine and better health-care standards, the majority of children with the condition now survive into adulthood. In fact, many adults with cerebral palsy have a near normal life expectancy.

Despite this, health-care systems in many countries worldwide have yet to create a clear clinical pathway for adults with cerebral palsy, meaning many lack access to a multidisciplinary support team to manage their condition. 

A recent study led by Royal College of Surgeons in Ireland (RCSI) and Brunel University London shows that patients with cerebral palsy are overall 75 percent more likely to have a non-communicable disease. Adults with the condition are about twice as likely to develop cardiovascular disease and chronic respiratory disease compared to adults without cerebral palsy. 

Adults with cerebral palsy are also 5.5 times more likely to suffer a stroke, 2.6 times more likely to develop heart failure, 2.2 times more likely to develop asthma and 1.6 times more likely to develop high blood pressure. 

Cerebral palsy is not a progressive condition, but research shows that careful long-term management and long-term care is necessary. At least a quarter of young adults with the condition report that their ability to walk gets worse, which may contribute to the development of chronic health conditions. 

For an adult with cerebral palsy, a non-communicable disease can have a huge impact on their daily health and wellness.  Many non-communicable diseases can be prevented through changes in lifestyle and adequate preventative healthcare. It is possible that many of these conditions could be prevented or delayed if people with cerebral palsy had access to more dedicated care.  

In addition to supporting the physical health of those with cerebral palsy, mental health is an equally important consideration. A study led by researchers from RCSI and the University of Surrey found that the risk of depression was 28 percent higher and the risk of anxiety was 40 percent higher among adults with cerebral palsy. 

Until recently, we did not know much about the consequences of aging with cerebral palsy. Our findings highlight the need for further research into the management of non-communicable diseases in this population.

Recent clinical guidelines for adults with cerebral palsy in the UK recommend that pathways need to be developed to allow adults with cerebral palsy access to a multidisciplinary team. 

This type of access to health-care professionals, such as physiotherapists, orthopedic surgeons and neurologists with knowledge of cerebral palsy early, may slow deterioration in the patient’s function and prevent development of secondary conditions with age.

It is imperative that we reframe how cerebral palsy is viewed in order to provide the positive health-care outcomes that we are capable of for those with cerebral palsy. Our health-care professionals must look at developing strong, multidisciplinary clinical pathways for adults with cerebral palsy. With the right health-care supports in place, adults with the condition can live long, healthy and active lives. 

Jennifer Ryan is research lecturer at the Royal College of Surgeons in Ireland and Senior Lecturer at Brunel University London.