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 Parkinsons 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 Prez, PhD, a professor in the department of biostatistics and data science with UTHealths School of Public Health in Austin, Texas.
Prez, a project co-investigator and biostatistician, will determine the scope and drivers of unequal and limited value for Parkinsons 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.
Parkinsons 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 Parkinsons 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 persons overall well-being and quality of life.
Dementia is reported to develop in about one-third of Parkinsons 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 Prez, current care models provide many people living with Parkinsons 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 Parkinsons and related dementia is often substandard and fraught with disparities, Prez said.
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, Prez said.
The grants 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 Colorados Anschutz Medical Campus.
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Study may improve palliative care for Parkinson's, related dementia - Parkinson's News Today
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