We Must Improve Stroke Outcomes in People With Disabilities and Dementia, Scientists Say
The American Heart Association and the American Stroke Association issued a joint statement on the necessity of better care for this historically underserved population.
One in four?American adults?(26 percent) live with some form of disability, according to the Centers for Disease Control and Prevention (CDC). Yet, when these individuals suffer a stroke, the fifth leading cause of death in the country, per the American Heart Association (AHA), they often experience delays in treatment or no treatment at all.
Historically, adults with disabilities have been excluded from clinical trials, which explains why there isn’t enough data to show how they would respond to stroke treatment. Doctors also tend to determine that a stroke is more severe in these individuals and deem them beyond hope of treatment.
Recognizing this, and the need to improve care and stroke outcomes for this underserved population, the AHA and the American Stroke Association (ASA) issued a statement?on March 28 regarding people with existing disabilities or dementia who receive treatment for?ischemic stroke.
People with dementia or existing disabilities who receive well-timed stroke treatment, such as clot removal therapy, may avoid additional disability and higher costs of care, said the organizations their statement, published in the journal?Stroke.
“The long-term consequences and costs of additional disabilities due to untreated stroke in people with preexisting neurological deficits are staggering,” said?Mayank Goyal, MD, PhD, the chair of the scientific statement writing committee and a clinical professor in the department of radiology and clinical neurosciences at the University of Calgary in Alberta, in the statement.
Based on an expert analysis of current research, the joint statement suggests that in cases of the most common form of stroke, ischemic stroke, treatments for clot removal were just as safe in adults with these preexisting conditions as in adults without them. The review recognized some evidence suggesting people with prestroke dementia are more likely to die, but found these findings were inconsistent. The statement also notes that treatment risk is different in each patient and risk may increase in patients with a preexisting disability.
Biases Could Be Responsible for Delays in Stroke Care
Researchers found that certain biases, such as ableism (discrimination against disabled people), ageism, and therapeutic nihilism (believing there’s no hope for effective treatment), could influence healthcare decision-making when considering treatment for people with a disability or dementia.
A?systematic study of 42 peer-reviewed articles published between March 2003 and March 2016 found many instances of implicit bias. Implicit bias is a term for attitudes and stereotypes we unconsciously develop toward people based on their gender, age, race, or other factors. These findings show an alarming truth: that healthcare workers are just as susceptible to implicit bias as the general population.
One reason people with disabilities have been largely excluded from stroke data is that the aim of randomized trials is to clearly track the benefit of new treatments, and this can be difficult to assess in disabled patients, explains Dr. Goyal. “So, in the past we used patients who were in a reasonably good premorbid status before the stroke. We’re [now] finding that many of these [disabled] patients do benefit from treatment. Treatment teams should not have an inherent bias just because [disabled] patients were not included in large randomized trials. That is not a reason to deny treatment,” he says.
Bonnielin Swenor, PhD, MPH, the founder and director of the Johns Hopkins Disability Health Research Center and an associate professor at the Johns Hopkins School of Nursing, says the AHA statement is a big first step. “There’s such a lack of awareness about the bias in healthcare toward people with disabilities — these are issues that have been under the radar for far too long.”
She hopes this new awareness will challenge stereotypical views of disability and shed light on how disability is perceived in healthcare spaces. “There’s still discourse and pushback against how people with disabilities view themselves,” she explains. “This is a group that faces inequities, and they need to be recognized, not just as a medical conceptualization, but as a community of people.”
The writing group responsible for the joint AHA-ASA statement suggests an increased awareness of these biases by practitioners, which may inform future clinical practice guidelines for stroke treatment for people living with disability or dementia.
A Better Approach for Stroke Care May Reduce Additional Disability and Long-Term Effects
What this means for people with disabilities and their families is that the tide is turning. As researchers begin to recognize their own implicit bias, they must adjust their clinical practice to better accommodate a diverse sample of patients. Although there is limited data available on people with disabilities who have suffered from ischemic strokes (including a 2013 clinical trial conducted by Health Economics Research Centre at the University of Oxford), the reality is that more research is needed to better serve a population that is expected to grow in the coming years. According to the Department of Economic and Social Affairs for the United Nations, it’s estimated that 15 percent of the population worldwide currently live with at least one disability. As the global population ages, the number of people with disabilities will grow. Therefore, the United Nations states that there is a clear need "for countries to take a longer-term approach to investment in the planning, design and construction of their community to ensure environmental inclusiveness and accessibility in moving towards the goal of creating a society which meets the needs and capacities of all users."
The joint AHA-ASA statement cites previous research that indicates that 79 percent of people with prestroke disability lived an average of 16 months after a stroke, with one-third requiring a move to an assisted living facility. In addition, the review reports that these individuals may experience additional disabilities such as decreased mobility, impaired speech, weakness or paralysis in the limbs, or they may not recover to their prestroke strength and mobility. Providing stroke treatment to these patients quickly (or even at all) may improve their quality of life.
For doctors, the proposed protocol for caring for people with disability or dementia includes discussions on all possible treatment options. Doctors should discuss quality of life and medical wishes for future care with patients and their families before the stroke. “We need to acknowledge the fact that in this emergency setting [doctors] may not have the best possible information,” says Goyal. Until an effective protocol to reduce inherent bias is adopted, disabled people should self-advocate for their care whenever possible. Goyal advises patients to create a living will and have an honest discussion with family about their expectations for care should they become impaired or unable to communicate. Since effective stroke treatment is often a race against time, planning ahead for a potential medical emergency is paramount.
While the statement recommends best practices for doctors, it’s equally important that patients and their families stay informed about their options for stroke treatment, because doctors are not infallible. In addition, Goyal recommends that healthcare providers adopt a patient-centered point of view by recognizing that individual values and beliefs about stroke aftercare will vary depending on race, ethnicity, religious beliefs, and socioeconomic status.
“The people carrying the greatest burden of illness have been traditionally excluded from research,” says Goyal. “That’s why patients and their families should consider participating in surveys or research studies to accelerate advancements.”