The purpose of this study is to improve outcomes for persons living with Parkinson's Disease (PD) and their family caregivers. The investigators hypothesize that outpatient interdisciplinary palliative care will improve patient-centered outcomes for PD patients at high-risk for poor outcomes.
Palliative care is an approach to caring for individuals with life-threatening illnesses that addresses potential causes of suffering including physical symptoms such as pain, psychiatric symptoms such as depression, psychosocial issues and spiritual needs. Palliative care approaches have been successfully applied to improve patient-centered outcomes in cancer as well as several chronic progressive illnesses including heart failure and pulmonary disease. To date there have been minimal attempts to apply these principles to PD although preliminary evidence suggests that PD patients have significant unmet needs under current models of care which may be amenable through a palliative care model. This study will provide critical information to forward this field including data on the comparative effectiveness of outpatient palliative care for PD versus current standards of care; effects of this intervention on cost and service utilization; and the characteristics of patients most likely to benefit from such an approach and the specific services most needed by PD patients and their caregivers.
Parkinson's DiseasePalliative Care
You can join if…
Open to people ages 40 years and up
Fluent in English
UK Brain Bank criteria for diagnosis of probable PD or Multiple Systems Atrophy (MSA)or Corticobasal Degeneration (CBD) or Progressive Supranuclear Palsy (PSP) or Lewy Body Dementia (LBD)
At high risk for poor outcomes as identified by the Palliative Care Needs Assessment Tool (PC-NAT)
You CAN'T join if...
Immediate and urgent palliative care needs
Unable or unwilling to commit to study procedures including;
study visits or
the addition of a neurologist to their care team
Presence of additional chronic medical illnesses which may require palliative services
Already receiving palliative care and/or hospice services.
University of California, San Franciscoaccepting new patients San Francisco, California, 94143, USA
University of Colorado Hospitalaccepting new patients Aurora, Colorado, 80045, USA
University of Alberta Canadaaccepting new patients Edmonton, Alberta, T6G 2E1, Canada