Cerebral palsy does not cause adult death, so why is it still listed as an underlying cause?

Adults with cerebral palsy do not die from cerebral palsy, but the condition is often listed on the record as a potential cause of
death for adults with cerebral palsy.
Research from the University of Michigan Health System has shown that mislabeling the cause of death in people with cerebral palsy may hinder appropriate treatment
for people with cerebral palsy.

When there is no primary cause and no autopsy is performed, cerebral palsy is usually recorded as a potential cause of
death.
This erroneous list, known as "diagnostic masking," not only harms people with the disease, but perpetuates a false narrative that patients may die from the disease
.

"Classifying their death as cerebral palsy is a problem for people trying to help people with cerebral palsy live long and healthy lives because it doesn't reveal the true cause of death," Dr.
Mark Peterson said.

”

In a study published in the Journal of Clinical Medicine called "Potential Causes of Death in Adults with Cerebral Palsy," Peterson and colleagues found that more than 25,000 adults died in the United States between 1999 and 2019, with cerebral palsy listed as a potential cause of
death.
Many of them cite respiratory illnesses as secondary causes
.

Respiratory diseases are a common cause of death in people with cerebral palsy because they are prone to pneumonia, respiratory failure, and aspiration
.
Other common causes include cardiovascular disease and organ failure
.

Ideally, the main cause of death listed should be the disease or condition in which the individual died, if such information is available
.
Cerebral palsy is then listed as a secondary cause or noted
on the record.
This approach will provide a better foundation for researchers and health care providers to begin understanding how different conditions and diseases interact
with cerebral palsy throughout a patient's lifetime.

This information can then be used for preventive capacity or to treat patients with cerebral palsy who may experience these diseases and conditions
in the future.
Not listing the cause of death correctly can lead to a lack of understanding of the situation because it is not known what
the individual really died from.

"The right etiology will inform
public health and clinical care coordination.
This information can provide providers with insights and better understand how to address these potential causes for people with cerebral palsy," Peterson said
.

Since the emergence of cerebral palsy in infancy, it has been considered a pediatric disease
.
This means that most people with cerebral palsy are confined to their pediatric care team and may have difficulty receiving appropriate care
as adults.
Today, more
adults than children have cerebral palsy in the United States.

Peterson advises people with cerebral palsy to seek out primary care providers
other than those who can treat symptoms of cerebral palsy.

"Many people with cerebral palsy are more likely to develop preventable chronic diseases
.
" Peterson said
.
"It's important to have a primary care provider
who can understand your cerebral palsy and any other scenarios that may arise.
"

Peterson said he hopes the study will be an educational tool
for those studying and caring for people with cerebral palsy, as well as clinicians and forensics responsible for listing potential causes of death.

"The more education there is on how different diseases interact with cerebral palsy, the more work can be done to prevent or address these diseases in patients
.
"