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).
– 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
– 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
– Caregivers may be self-identified in cases of severe dementia in order to obtain data
relevant to this vulnerable and underrepresented group.
– 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.
- University of California, San Francisco, San Francisco, California, United States, 94143