Source: Thomas Jefferson University.
Summary: A study of national data shows the devastating impact the pandemic has had on those with intellectual disabilities and their caregivers.
Intellectual disability puts individuals at higher risk of dying earlier in life than the general population, for a variety of medical and institutional reasons. A new study from Jefferson Health examined how the COVID-19 pandemic has affected this group, which makes up 1-3% of the US population. The study, published today in the New England Journal of Medicine (NEJM) Catalyst, found that intellectual disability was second only to older age as a risk factor for dying from COVID-19.
“The chances of dying from COVID-19 are higher for those with intellectual disability than they are for people with congestive heart failure, kidney disease or lung disease,” says lead author Jonathan Gleason, MD, the James D. and Mary Jo Danella Chief Quality Officer for Jefferson Health. “That is a profound realization that we have not, as a healthcare community, fully appreciated until now.”
The authors examined 64 million patient records from 547 healthcare organizations between January 2019 to November 2020 to understand the impact of the COVID-19 pandemic on patients with intellectual disabilities. They identified variables such as COVID-19, intellectual disability or other health conditions, as well as demographic factors such as age.
The results showed that those with intellectual disabilities were 2.5 times more likely to contract COVID-19, were about 2.7 times more likely to be admitted to the hospital and 5.9 times more likely to die from the infection than the general population.
“Our failure to protect these deeply vulnerable individuals is heart-breaking,” says co-author Wendy Ross, MD, a developmental and behavioral pediatrician and director for the Center for Autism and Neurodiversity at Jefferson Health. “I believe that if we can design a system that is safe and accessible for people with intellectual disabilities, it will benefit all of us.”
The authors write that patients with intellectual disabilities may have less ability to comply with strategies that reduce the risk of infection, such as masking and social distancing. In addition, the researchers showed that these patients are more likely to have additional health conditions that contribute to a more severe course of COVID-19 disease. The results of the study highlight how these issues become compounded in this population.
“We need to understand more about what is happening with these patients,” says Dr. Gleason. “I do believe these patients and their caregivers should be prioritized for vaccination and healthcare services. We should reflect on why we have failed this vulnerable population, and how we can better serve them during this health crisis, and into the future,” Dr. Gleason says. “Even prior to the pandemic, individuals with intellectual disabilities have had poor health outcomes. We need to do much better.”
The authors suggest key action steps that require a rapid response. “First, those with intellectual disabilities and their caregivers should be prioritized for vaccines by organizations that set federal guidelines, including the CDC,” says Dr. Gleason. “Second, federal and state healthcare regulatory offices should measure access, quality and safety in this population in order to track our ability to improve health outcomes for these patients. Finally, the United States should redesign the care model for individuals with intellectual disabilities.”
“As an organization deeply committed to advocating for the health of one of the most marginalized populations — those with intellectual disabilities (ID) — we have seen the need for people with ID to be prioritized as a high-risk group during this pandemic. It’s devastating to hear that people with ID are almost six times more likely to die from COVID-19,” said Alicia Bazzano, MD, PhD, MPH, Chief Health Officer of the Special Olympics. “Most health authorities do not recognize that people with ID who get COVID-19 have a much higher risk of dying. Special Olympics is grateful to the Jefferson team for shining a spotlight on these devastating numbers.”