Pilot to Assess the Acceptance of Palliative Care Referral Among Those With Parkinson Disease
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Parkinson Disease
- Sponsor
- University of Rochester
- Enrollment
- 20
- Locations
- 1
- Primary Endpoint
- Proportion of enrolled participants who have at least 1 visit with a palliative care provider within 3 months of referral
- Status
- Completed
- Last Updated
- 6 years ago
Overview
Brief Summary
This study will assess the feasibility of using specific criteria to standardize the referral of individuals with Parkinson disease to a group of medical providers known as palliative care specialists. Palliative care specialists provide supportive care to individuals living with serious illnesses. The specialty focuses on providing relief from the symptoms and stress of serious illness.
Investigators
Christopher Tarolli
Assistant Professor
University of Rochester
Eligibility Criteria
Inclusion Criteria
- •Diagnosis of idiopathic PD confirmed as most likely diagnosis with participant's treating provider
- •18 years of age or older
- •Participant or care partner able to provide informed consent
- •Presence of one or more of the following:
- •Uncontrolled symptoms (over prior week):
- •Depression
- •Critical events (over prior 6 months):
- •Unintended weight loss
- •Wheelchair dependence (\>50% of time)
Exclusion Criteria
- •Diagnosis of atypical or secondary parkinsonism
- •Outpatient palliative care visit scheduled or within the prior 6 months of the screening visit
- •Subjects who are care partners:
- •Inclusion Criteria:
- •Care partner of enrolled participant in the study
- •18 years of age or older
- •Able to provide informed consent
- •Exclusion Criteria:
- •No care partner specific exclusion criteria
Outcomes
Primary Outcomes
Proportion of enrolled participants who have at least 1 visit with a palliative care provider within 3 months of referral
Time Frame: 3 months
We will assess the feasibility of standardized referral to palliative care by calculating the proportion of enrolled participants with Parkinson disease who have at least 1 visit with a palliative care provider within 3 months of referral.
Secondary Outcomes
- Change in mean symptom burden(Baseline to 3 months)
- Change in mean caregiver self-efficacy(Baseline to 3 months)
- Barriers to palliative care referral(3 months)
- Change in mean quality of life as assessed by the Quality of Life-Alzheimer Disease questionnaire (QoL-AD)(Baseline to 3 months)
- Change in mean caregiver burden(Baseline to 3 months)