Preparing Patient-Caregiver Dyads with Parkinson's Disease for Future Decision Making
Preparing Patient-Caregiver Dyads with Parkinson's Disease for End-of-Life Decision Making
Study Overview
Status
Conditions
Intervention / Treatment
Detailed Description
Investigators are looking for pairs of participants consisting of a person with a diagnosis of Parkinson's Disease, and a family care partner who is most likely to help make medical decisions in the future.
For this study, pairs will complete a survey to understand how engaged participants are in discussing future medical decisions, demographics, and the severity of Parkinson's disease. This survey will take about 15 minutes. Then, participants will work through a medical decision making support intervention together. Completing the intervention in-person, on the phone, or via video conferencing is acceptable. The resources will provide information on future medical decisions participants may need to make. The intervention is completely online and will take about 60 minutes to complete. Participants will have 2 weeks to complete the intervention.
The investigators will call participants a week after enrollment to ask about technical difficulties completing the intervention, provide assistance with intervention material navigation as needed, and answer questions about the intervention. Participants will receive another online survey 2 weeks after enrollment to understand engagement in discussing future medical decisions, and acceptability of the intervention. The 2 week survey will take about 15 minutes to complete.
Study Type
Enrollment (Actual)
Phase
- Not Applicable
Contacts and Locations
Study Locations
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Indiana
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West Lafayette, Indiana, United States, 47907-2069
- Purdue University
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Participation Criteria
Eligibility Criteria
Ages Eligible for Study
Accepts Healthy Volunteers
Description
Person with Parkinson's Disease Inclusion Criteria:
- Self-report a clinical diagnosis of Parkinson Disease
- Does not have a diagnosis of dementia
- Speak and read English
- Have access to a reliable phone or internet connection
- Have access to an online connection through a smartphone, tablet, or computer device
- Be comfortable navigating websites or have someone available to assist
- Agree to be audio recorded during intervention
Care Partner Inclusion Criteria:
- Self-identify as the family member who will likely make medical decisions for the person with Parkinson Disease in the future OR who is the legally appointed health care representative
- Self-report not having a diagnosis of dementia
- Speak and read English
- Have access to a reliable phone or internet connection
- Have access to an online connection through a smartphone, tablet, or computer device
- Be comfortable navigating websites or have someone available to assist
- Agree to be audio recorded during intervention
Exclusion Criteria:
- Cannot see well enough to see words on a newspaper even with corrective lenses
- Used the intervention resources before
- If cognition is questionable and cannot pass consent understanding questions
Study Plan
How is the study designed?
Design Details
- Primary Purpose: Supportive Care
- Allocation: N/A
- Interventional Model: Single Group Assignment
- Masking: None (Open Label)
Arms and Interventions
Participant Group / Arm |
Intervention / Treatment |
|---|---|
|
Experimental: Parkinson's medical decision making support intervention group
All participants will complete an online medical decision making intervention, lasting about 60 minutes, and complete pre and post surveys.
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Participants will be asked to view and work through medical decision making support resources.
The resources will include information on medical decisions that may occur in Parkinson's disease, and general medical decisions that anyone may need to make (i.e.
choosing a medical decision maker).
The resources will also include suggestions on how to discuss these decisions.
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What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
|
Change from baseline Advance Care Planning Engagement Survey at 2 weeks
Time Frame: Baseline, 2 weeks post intervention
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Assesses knowledge, contemplation, self-efficacy, and readiness on a 5-point Likert scale.
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Baseline, 2 weeks post intervention
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Intervention feasibility/acceptability
Time Frame: 2 weeks post intervention
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Ratings of ease of use, helpfulness, and likeliness of recommending the intervention to others on Likert-scales.
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2 weeks post intervention
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Collaborators and Investigators
Sponsor
Investigators
- Principal Investigator: Jiayun Xu, Purdue University
Study record dates
Study Major Dates
Study Start (Actual)
Primary Completion (Actual)
Study Completion (Actual)
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Actual)
Study Record Updates
Last Update Posted (Actual)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Additional Relevant MeSH Terms
Other Study ID Numbers
- K23NR019099-01A1 (U.S. NIH Grant/Contract)
Plan for Individual participant data (IPD)
Plan to Share Individual Participant Data (IPD)?
Drug and device information, study documents
Studies a U.S. FDA-regulated drug product
Studies a U.S. FDA-regulated device product
product manufactured in and exported from the U.S.
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