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Palliative Care for Parkinson's and Related Disorders

Active, not recruiting

For individuals with chronic, progressive illnesses, palliative care addresses potential causes of suffering, including physical and psychiatric symptoms, psychosocial issues, and spiritual needs. This study will compare usual care in the community to care augmented by palliative training and telemedicine support for people with Parkinson's disease and related disorders, including progressive supranuclear palsy, corticobasal degeneration, multiple system atrophy, and Lewy body dementia.

Minimum Age Maximum Age Gender Healthy Volunteers
18 Years 105 Years All No
March 1, 2017
March 31, 2021
360

  • Probable Parkinson's disease, progressive supranuclear palsy, corticobasal degeneration, multiple system atrophy, or Lewy body dementia
  • At high risk for poor outcomes as defined by the Brief Needs Assessment Tool, which screens for psychosocial issues, symptoms, and caregiver burden
  • Caregiver identified by asking the patient who helps the most outside of the clinic or self-identified in cases of severe dementia
  • Fluent in English

  • Chronic medical illnesses that may require palliative services, such as metastatic cancer, or already receiving palliative care or hospice services
  • Not expecting to continue care with the enrolled physician for at least 6 months

Evidence shows that many of the needs most important to Parkinson's disease patients and their caregivers, such as depression relief and planning for the future, are poorly addressed under current models of care. This study will test the effectiveness and feasibility of a novel community-based intervention that empowers community neurology practices to improve care for Parkinson's disease patients and caregivers through palliative care training, coaching, and telemedicine resources. 

Participants will receive either usual care from the neurology care team or usual care augmented by palliative care, with additional support provided by the University of Colorado-Denver Neurology Palliative Care team, for up to 2 years. Clinicians enrolled in the study will receive an 8-hour supportive and palliative care training, followed by monthly coaching. Researchers believe this intervention will improve patient quality of life and caregiver burden.

Name City State Zip Status Primary Contact
University of California, San Francisco
San Francisco California 94143

University of Colorado Denver
Aurora Colorado 80045

University of Colorado, Denver

  • National Institute of Nursing Research (NINR)
  • University of California, San Francisco

Name Role Affiliation
Benzi M. Kluger, MD Principal Investigator University of Colorado, Denver

Name Phone Email
Christine S. Martin 303-724-8885 christine.martin@ucdenver.edu
Laura Palmer 303-724-8287 laura.palmer@ucdenver.edu

NCT03076671

More Than a Movement Disorder: Applying Palliative Care to Parkinson's Disease