Integrated palliative care for Parkinson’s disease and PD dementia: reducing low-value care and disparities

Who could benefit from this research

What this research studies

People living with PD or PDD often receive too much low-value care, especially for non-motor symptoms. This project looks at how including palliative care components like planning, symptom management, and safe prescribing could reduce hospitalizations and end-of-life care that may not help patients. By examining care delivery across organizations and communities, the researchers aim to identify factors that drive variation in how PD/PDD is treated and how to standardize better care. The work will use real-world data to understand how organizational and policy contexts affect patient outcomes. If successful, the approach could guide more consistent, patient-centered care for PD and PDD patients.

Why it matters

Where this research is happening

• University of Pennsylvania
  Philadelphia, United States Active

Researchers

• Principal investigator: Willis, Allison — University of Pennsylvania
• Study coordinator: Willis, Allison

Related research

Other NIH-funded projects on the same topics.

• Better palliative care for Black and Hispanic people with Parkinson's and Lewy body dementia

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• Improving palliative care for people with Parkinson's disease and related disorders in Black and Hispanic communities

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  NIH research University of Rochester · Rochester, United States · NIH-11021329

• Examining how integrated palliative care affects health outcomes in Parkinson's disease and Lewy body dementia.

  This study is looking at how adding palliative care can help people with Parkinson's disease and Parkinson's disease dementia feel better by managing their symptoms and planning their care, so they can avoid unnecessary hospital visits and get the support they need.

  NIH research University of Pennsylvania · Philadelphia, United States · NIH-10701322

• Palmitoyltransferase and GBA1 function restoration in Parkinson’s and Lewy body dementia

  A fast-moving study looks at whether tweaking a fat-attachment process on proteins can restore healthy enzyme function and slow the progression of Parkinson’s disease and Lewy body dementia.

  NIH research Brigham and Women's Hospital · Boston, United States · NIH-11453161

• Palliative care at home for people with dementia

  A team-based home palliative care program using community health workers, nurses, and social workers to support older adults with advanced dementia and their family caregivers.

  NIH research Icahn School of Medicine at Mount Sinai · New York, United States · NIH-11176362

• Improving palliative care for older adults with dementia who speak limited English

  This study is looking at the difficulties older adults with Alzheimer's and similar conditions who don't speak much English face when trying to get palliative care, and it aims to find ways to make communication better and improve their quality of life.

  NIH research University of Washington · Seattle, United States · NIH-11128516

About this research

1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
3. For full project details, budget, and progress reports, visit the official NIH RePORTER page.