Community Outreach for Palliative Engagement -- Parkinson Disease

Summary

The purpose of this study is to learn more about the effectiveness of palliative care training for community physicians and telemedicine support services for patients and carepartners with Parkinson's disease and Lewy Body Dementia (LBD) or related conditions and their care partners. Palliative care is a treatment approach focused on improving quality of life by relieving suffering in the areas of physical symptoms such as pain, psychiatric symptoms such as depression, psychosocial issues and spiritual needs. Telemedicine is the use of technology that allows participants to interact with a health care provider without being physically near the provider.

Conditions

• Parkinson Disease Dementia
• Parkinson Disease
• Parkinson's Disease and Parkinsonism
• Lewy Body Parkinsonism
• Dementia With Lewy Bodies
• Progressive Supranuclear Palsy
• Corticobasal Degeneration
• Multiple System Atrophy
• Vascular Parkinsonism

Interventions

OTHER

Parkinson Disease Standard Care

Under usual care, community providers will deliver their usual care and center coordinators will collect data on our outcomes every 3 months. After one year of baseline data collection, eight practices will be randomized to the intervention, which will include clinician training and coaching as well as access to online services for their patients. Per the stepped-wedge design an additional eight practices will be randomized 18 months into the data collection period, and the final eight will enter the intervention 24 months into the data collection period to allow for 12 months intervention recruitment for all practices.

OTHER

Online Community-Supported Palliative Care

Neurologist Teleconferences: Training and coaching in palliative care will be provided using the Extension for Community Healthcare Outcomes (ECHO) model augmented by a Community of Inquiry Framework to address a desire for greater peer connection, enhance self-efficacy, and to address potential weaknesses in the ECHO model for more complex interventions such as palliative care. Additional support services provided to carepartners and patients will be through the Family Caregiver Alliance's CareNav platform, including tailored educational materials, support groups and social support.

Sponsors & Collaborators

• University of Colorado, Denver

  collaborator OTHER

• Stanford University

  collaborator OTHER

• Massachusetts General Hospital

  collaborator OTHER

• University of Rochester

  lead OTHER

Principal Investigators

• Benzi Kluger, MD · University of Rochester

Study Design

Allocation

RANDOMIZED

Purpose

TREATMENT

Masking

NONE

Model

CROSSOVER

Eligibility

Min Age

40 Years

Sex

ALL

Healthy Volunteers

Yes

Timeline & Regulatory

Start

2022-04-26

Primary Completion

2026-09-01

Completion

2026-12-31

Countries

• United States

Study Locations