Community Outreach for Palliative Engagement -- Parkinson Disease

Last updated: May 13, 2025
Sponsor: University of Rochester
Overall Status: Active - Recruiting

Phase

N/A

Condition

Multiple System Atrophy

Dementia

Parkinson's Disease

Treatment

Parkinson Disease Standard Care

Online Community-Supported Palliative Care

Clinical Study ID

NCT05222386
STUDY6775
  • Ages > 40
  • All Genders
  • Accepts Healthy Volunteers

Study 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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

PATIENT INCLUSION CRITERIA:

• Over age 40 years and diagnosed with PD or other causes of parkinsonism, such as progressive supranuclear palsy, multiple system atrophy and Lewy Body Dementia by their community neurologist.

Exclusion

Exclusion Criteria:

PATIENT EXCLUSION CRITERIA:

  • Potential patient subjects who are unable or unwilling to commit to study procedures

  • Presence of additional medical illnesses which requires palliative services (e.g.metastatic cancer)

  • Already receiving palliative care or hospice services.

Study Design

Total Participants: 710
Treatment Group(s): 2
Primary Treatment: Parkinson Disease Standard Care
Phase:
Study Start date:
April 26, 2022
Estimated Completion Date:
December 31, 2026

Study Description

Investigators propose to conduct a pragmatic stepped-wedge comparative effectiveness trial comparing a novel model of providing community-based palliative care for persons living with Parkinson's disease (PD), Lewy Body Dementia (LBD) and related disorders through online communities to usual care. Our intervention includes support for both community neurologists (using the ECHO model of clinician support) as well as family caregivers and patients. Investigators hypothesize that this model of care will improve patient quality of life and caregiver burden as well as other important secondary outcomes such as patient symptom burden and clinician burnout. This study will recruit neurology providers (MD and APPs) from 24 community neurology practices. These practices will identify participants for the study who have PD, LBD or a related condition and moderate to high palliative care needs. 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, 6 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 six practices will be randomized 18 months into the data collection period, six at 24 months, and the final six will enter the intervention 30 months into the data collection period to allow for 12 months intervention recruitment for all practices.

Connect with a study center

  • University of Rochester Medical Center for Health + Technology

    Rochester, New York 14642
    United States

    Active - Recruiting

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