$3.9M NIH grant aims to improve palliative care for Parkinson’s
Neurology-led teams to test new model at 33 Movement Disorders Centers
A five-year project funded by a $3.9 million National Institutes of Health (NIH) research grant will study how team-based palliative care might lead to better health services and ease disparities in Parkinson’s disease and disease-related dementia care.
Palliative care focuses on improving the quality of life for individuals with serious illnesses, aiming to address the physical, emotional, and social needs of patients and their families.
But in practice, it can be excessive with inappropriate treatments, of low value, and unequal in the care given patients by their socioeconomic or ethnic status, a project co-investigator noted.
The grant was awarded to UTHealth Houston, the University of Pennsylvania, and other institutions, and includes a $1.9 million subcontract given to Adriana Pérez, PhD, a professor in the department of biostatistics and data science with UTHealth’s School of Public Health in Austin, Texas.
Disparities affect palliative care for Parkinson’s and disease-related dementia
Pérez, a project co-investigator and biostatistician, will determine the scope and drivers of unequal and limited value for Parkinson’s patients.
“The strength of our proposed research is the focus on health equity with the use of Medicare claims which would provide new knowledge that could be used to reduce disparities and improve end-of-life care for vulnerable sub-groups,” she said in a university press release.
Parkinson’s is caused by the progressive loss of nerve cells in the brain responsible for making dopamine, a chemical these cells use to communicate with one another. Their loss leads to the hallmark motor symptoms of the disease.
But Parkinson’s patients also experience nonmotor disease symptoms that include dementia, mood disorders such as depression and anxiety, sleep disturbances, and problems in the autonomic nervous system responsible for involuntary processes like digestion and blood pressure. These also can significantly impact a person’s overall well-being and quality of life.
Dementia is reported to develop in about one-third of Parkinson’s patients, and like the difficulties with movement and balance that patients experience, it is due to the accumulation in the brain of toxic clumps of the alpha-synuclein protein, called Lewy bodies.
While dementia and other nonmotor symptoms can be given less attention and insufficient treatment, “they are the leading causes of hospitalization and institutionalization among patients with these diseases in the U.S.,” UTHealth noted in the release.
According to Pérez, current care models provide many people living with Parkinson’s disease or related dementia with excessive services of little value, and are “unequal across palliative domains.”
Previous research also indicates that women and patients of Hispanic, Asian, or African American ethnicity — along with factors guiding healthcare systems and policies — are not given needed information and resources.
“End-of-life care” for people with Parkinson’s and related dementia “is often substandard and fraught with disparities,” Pérez said.
33 of 65 academic Movement Disorders Centers to test team-based care model
To address this, the scientists are conducting a large-scale trial of team-based, neurology-led palliative care in 33 of the 65 academic Movement Disorders Centers across the U.S., a model previously found to be effective at a few of them. The study will compare Medicare data at the involved centers with data collected at the 32 centers not part of this trial.
This model is based on ”increasing advance care planning, and decreasing acute care for non-motor symptoms, low-value end-of-life care, prescribing of potentially inappropriate medications, and sociodemographic disparities,” Pérez said.
The grant’s principal investigator is Allison Wills, MD, an associate professor in the department of neurology at the University of Pennsylvania. Other co-investigators include Benzi Kluger, MD, a professor of neurology at the University of Rochester Medical Center; and Jean Kutner, MD, a professor of internal medicine at the University of Colorado’s Anschutz Medical Campus.
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