More Than a Movement Disorder: Applying Palliative Care to Parkinson's Disease
Completed · Not applicable
Conditions studied: Parkinson Disease, Parkinsonism, Lewy Body Disease, Supranuclear Palsy, Progressive, Parkinsonism Vascular, Multiple System Atrophy, Corticobasal Degeneration, Alzheimer Disease, Frontotemporal Dementia, Primary Progressive Aphasia, Vascular Dementia
In brief
This is a two-center (University of Colorado, University of California San Francisco) community-based comparative effectiveness study of outpatient palliative care for Parkinson's disease (PD) and related disorders (progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple systems atrophy (MSA), Lewy Body Dementia (LBD). In September 2018, the study was amended to also include Alzheimer's disease (AD) and related disorders (Frontotemporal Dementia (FTD), Primary Progressive Aphasia (PPA), Vascular Dementia). It will utilize a randomized stepped-wedge design to compare patient and caregiver outcomes between usual care in the community versus usual care augmented by palliative training and telemedicine support to provide other resources (e.g. social work).
Key facts
- Study ID
- NCT03076671
- Run by
- University of Colorado, Denver
- People needed
- 783
- Starts
- 2017-03-01
- Expected to finish
- 2020-12-31
- Last updated by the study team
- 2021-05-14
Who can join
Age: 18 and older, up to 105. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Patients must be fluent English Speakers,
- Must be over age 18,
- They must meet United Kingdom (UK) Brain Bank criteria for probable PD, or
- They must meet standard criteria for
- progressive supranuclear palsy (PSP),
- corticobasal degeneration (CBD),
- multiple systems atrophy (MSA),
- vascular parkinsonism, or
- Lewy Body Dementia (LBD)
- Alzheimer's dementia (AD)
- Primary progressive aphasia
- Vascular dementia.
- Patients must be at high risk for poor outcomes as defined by the Brief Needs Assessment Tool (BNAT) which screens for psychosocial issues, symptoms, and caregiver burden.
- Caregivers will be identified by asking the patient: "Could (participant) tell us the one person who helps (participant) the most with (participant's) PD outside of clinic?"
- Caregivers may be self-identified in cases of severe dementia in order to obtain data relevant to this vulnerable and underrepresented group.
You may not qualify if…
- Unable or unwilling to commit to study procedures;
- Presence of additional chronic medical illnesses which may require palliative services (e.g. metastatic cancer); or
- Already receiving palliative care or hospice services.
- Not expecting to continue care with enrolled physician for at least 6 months.
- The investigators have purposefully kept our inclusion/exclusion criteria broad to allow for greater generalizability of results and to ensure inclusion of potentially underrepresented and understudied subgroups.
Where it is running
- University of California, San Francisco — San Francisco, California, United States
- University of Colorado Denver — Aurora, Colorado, United States
Full record on ClinicalTrials.gov
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