RACIST MEDICINE
For people with Parkinson’s disease, quality of life linked to race, ethnicity
Black, Hispanic, Asian people reported lower quality of life than white people
Peer-Reviewed PublicationMINNEAPOLIS – Among those living with Parkinson’s disease, Black, Hispanic and Asian people were found to have a lower health-related quality of life than white people, according to a new study published in the April 5, 2023, online issue of Neurology® , the medical journal of the American Academy of Neurology.
Health-related quality of life is a measure of a person’s level of comfort, health and happiness.
Parkinson’s disease is a disorder of the central nervous system that causes uncontrolled movements, stiffness and loss of balance. It can be debilitating. Symptoms worsen over time making it increasingly difficult to engage in daily activities.
“Racial and ethnic minorities have been underrepresented in Parkinson’s disease research, which has limited our understanding of treatments and outcomes across these populations,” said study author Daniel Di Luca, MD, of the University of Toronto in Canada. “Previous research has shown that some populations may have limited access to neurologists, medications and other therapies. Our study found that Black, Hispanic and Asian people with Parkinson’s do have a lower quality of life than white people, and that some health disparities and management differences persist even with ongoing expert neurologist care.”
The study involved 8,514 people with Parkinson’s disease; 90% were white, 6% were Hispanic, 2% were Asian and 2% were Black.
To evaluate quality of life, researchers asked participants to complete a questionnaire. It included 39 questions on how often during the past month participants experienced difficulty with daily tasks such as housework, cooking and getting around in public. It also asked how often they felt anxious, depressed, ignored by others or unable to communicate properly. Participants answered each question using a five-point scale with zero representing never and four representing always. The higher the score, the worse the quality of life.
After adjusting for factors such as age, sex and disease duration as well as medical conditions such as diabetes and high blood pressure, the total average score was 29 for Black people, 27 for Hispanic people, 25 for Asian people and 23 for white people. When looking at responses to various questions, scores for mobility, emotional well-being, social support and pain were also worse for Black, Hispanic, and Asian people than for white people.
The researchers found that thinking and memory tests accounted for some of the differences in quality-of-life scores between Black, Hispanic, Asian and white people. Di Luca noted that previous studies have shown lower socioeconomic status, education and other psychological stressors may be associated with worse cognitive scores. In addition, cultural biases have also been shown to potentially influence the results of cognitive testing.
“Evaluating the underlying reasons behind differences in quality of life between racial and ethnic groups is crucial to improve care,” Di Luca said. “Future studies are needed to gain a better understanding of the reasons for treatment and outcome differences in underrepresented populations, including differences in thinking and memory, clinical care and quality of life.”
A limitation of the study was the small number of people in the non-white, non-Hispanic groups, which Marras said limited researchers’ ability to detect small but potentially important differences.
The study was supported by the Parkinson’s Foundation and the Parkinson’s Outcomes Project.
Learn more about Parkinson’s disease at BrainandLife.org, home of the American Academy of Neurology’s free patient and caregiver magazine focused on the intersection of neurologic disease and brain health. Follow Brain & Life® on Facebook, Twitter and Instagram.
When posting to social media channels about this research, we encourage you to use the hashtags #Neurology and #AANscience.
The American Academy of Neurology is the world’s largest association of neurologists and neuroscience professionals, with over 40,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, concussion, Parkinson’s disease and epilepsy.
For more information about the American Academy of Neurology, visit AAN.com or find us on Facebook, Twitter, Instagram, LinkedIn and YouTube.
JOURNAL
Neurology
Disparities identified among patients receiving advanced pulmonary support
NIH-funded study finds some adults are more likely to receive ECMO when compared to those who received mechanical ventilation only
Peer-Reviewed PublicationSome adults with severe respiratory illness, including women, those with public insurance, and people with fewer financial resources, may be less likely to receive an advanced form of life support known as extracorporeal membrane oxygenation (ECMO). A research team supported by the National Institutes of Health found that adults who received ECMO appeared to skew toward men, people with private health insurance, and those who came from areas with higher median incomes. ECMO helps patients with life-threatening illness or injury breathe by simulating the function of the heart and/or lungs, while giving those organs a chance to rest.
The study published in the Annals of the American Thoracic Society.
In ECMO, a machine pumps blood out of the body, sends it through devices that feed it oxygen, and then returns it to the body. It is typically a treatment of last resort and provided to patients who first receive mechanical ventilation, a standard type of breathing assistance used in critical care.
Researchers reviewed health insurance data from more than 2 million adults with severe respiratory illness between 2016 and 2019, using the Nationwide Readmissions Database. All patients first received mechanical ventilation, which in this case was defined as having a breathing tube inserted into the airways to help their bodies receive enough oxygen.
Supplemental oxygen can also be provided through a face mask or breathing tubes inserted into the nostrils, but this review only looked at advanced breathing assistance. Among adults who received mechanical ventilation, 18,725 also received ECMO.
After conducting multiple analyses, the researchers found that men received ECMO more often than women, even if they had the same type of insurance and income level. Men accounted for 64% of patients receiving ECMO compared to 36% of women. In addition, men made up 55% of those who just received mechanical ventilation, compared to 45% of women.
When looking at ECMO based on insurance types, 38% of patients had private insurance and 37% had Medicare. However, 18% had Medicaid and 7% had other insurance, which could include being uninsured. Among patients who only received mechanical ventilation, 58% used Medicare, 17% used Medicaid, 17% used private insurance, and 8% had other insurance.
Patients from higher income areas accounted for 25% of those who received ECMO, as did 25% of patients from lower-income areas. Still, just 17% of patients who only received mechanical ventilation came from high-income areas, compared to 33% of patients from lower-income areas.
“The goal is to really get people thinking about where some disparities within critical care might live,” said Anuj B. Mehta, M.D., the first study author and an assistant professor of medicine within the Division of Pulmonary Sciences and Critical Care Medicine at Denver Health and Hospital Authority and the University of Colorado School of Medicine. “The next step is to think about how we can investigate those disparities with better data and better sources, which supports the long-term goal of ensuring equitable care.”
Mehta, a pulmonologist and critical care medicine doctor, stressed these findings are associations and do not necessarily mean that doctors intentionally refer some patients over others for advanced care. He and the authors note multiple factors could explain these variations.
Implicit bias among health care providers could be one. Patient preferences could be another. Neither one of these factors could be controlled for in this retrospective review, the researchers said. Living near or being more likely to be referred to an advanced medical center that provides ECMO could be a third. Since ECMO is not available at all medical centers and can be limited where it is offered, about half of all eligible patients receive it. However, even after controlling for access to ECMO, such as looking at patients who received care at the same hospital, the researchers still found disparities.
In addition to controlling for gender, health insurance, and income, the researchers assessed other factors to allow for similar comparisons among patients. This included age, severity of illness, reasons for seeking care, regions where they sought care, and other health conditions.
“These findings add to existing research that shows more work is needed to both understand and alleviate disparities in advanced pulmonary care,” said James P. Kiley, Ph.D., the director of the Division of Lung Diseases at the National Heart, Lung, and Blood Institute (NHLBI).
ECMO was created about 50 years ago. Despite its mixed outcomes in prolonging life compared to other types of respiratory care, its use continues to expand.
There are two types of ECMO: veno-venous (VV), which provides breathing support by taking over for the lungs, and veno-arterial (VA), which assumes the role of both the heart and lungs. VA ECMO is often used to help patients recovering from major heart surgery. VV ECMO may provide temporary breathing assistance to patients waiting for a lung transplant, or to assist patients recovering from severe respiratory failure.
The study was funded primarily by NHLBI (K23HL141704) and received additional support from the National Institute of Nursing Research (R01NR016459).
Reference: Mehta AB, Taylor JK, Day G, et al. Disparities in adult patient selection for extracorporeal membrane oxygenation in the United States: A population-level study. Ann Am Thorac Soc. 2023; doi: 10.1513/AnnalsATS.202212-1029OC.
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About the National Heart, Lung, and Blood Institute (NHLBI): NHLBI is the global leader in conducting and supporting research in heart, lung, and blood diseases and sleep disorders that advances scientific knowledge, improves public health, and saves lives. For more information, visit https://www.nhlbi.nih.gov/.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit https://www.nih.gov/.
NIH...Turning Discovery Into Health
JOURNAL
Annals of the American Thoracic Society
ARTICLE TITLE
Disparities in adult patient selection for extracorporeal membrane oxygenation in the United States: A population-level study
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