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

Parkinson's disease (PD) is the second most common neurodegenerative illness affecting
approximately 1.5 million Americans and is the 14th leading cause of death in the United
States. PD is traditionally described as a movement disorder with characteristic motor
symptoms (e.g. tremor). However, more recent research demonstrates the impact of nonmotor
symptoms such as pain, depression, and dementia on mortality, quality of life (QOL), nursing
home placement and caregiver distress. Regarding models of care for PD, evidence suggests
that care including a neurologist results in lower mortality and nursing home placement than
care solely from a primary care physician. Unfortunately, there is also significant evidence
that many of the needs most important to PD patients and their caregivers (e.g. depression,
planning for the future) are poorly addressed under current models of care. Palliative care
is an approach to caring for individuals with life-threatening illnesses that focuses on
addressing potential causes of suffering including physical and psychiatric symptoms,
psychosocial issues and spiritual needs. While developed for cancer patients, palliative care
approaches have been successfully applied in other chronic progressive illnesses including
heart failure and pulmonary disease. To date there have been minimal attempts to apply these
principles to PD although evidence suggests that PD patients' unmet needs under current
models of care may be amenable to palliative care. A small but growing cadre of centers offer
outpatient palliative care for PD with early evidence of efficacy and a randomized trial of
an academic-based outpatient palliative care is underway led by investigators on this
proposal. While this work is critical to forwarding this field, further work is needed to
provide a model that can be widely disseminated. The current proposal addresses this gap by
assessing the effectiveness and feasibility of a novel community-based intervention that
empowers community neurology practices to improve care for PD patients and caregivers through
palliative care training, coaching and telemedicine resources. The investigators hypothesize
that this intervention will improve patient QOL and caregiver burden and will prove feasible
and acceptable to community providers. The investigators Specific Aims are to: 1) Determine
the a) effectiveness and b) feasibility of a novel community-based outpatient palliative care
intervention for PD.; 2) Describe the effects of a this intervention on patient and caregiver
costs and service utilization; and 3) Identify opportunities to optimize community-based
palliative care for this population by: a) describing patient and caregiver characteristics
associated with intervention benefits; and b) through direct patient, caregiver and provider
interviews. Innovations of the investigators approach include a novel model of providing
disease-specific community-based palliative care not dependent on limited palliative
specialist resources, a stepped-wedge trial design and use of telemedicine resources to
provide multidisciplinary care. The research is significant because it will create a
foundation for future community-based dissemination studies in PD and the broader field of
palliative care.

Inclusion Criteria:

- 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).

- 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.

Exclusion Criteria:

- 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.