Preparing Patient-Caregiver Dyads With Parkinson's Disease for Future Decision Making

Study Overview
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Brief Summary
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Persons with Parkinson's disease and family care partners are often unprepared to make difficult, future medical decisions. Earlier conversations about future medical decisions between persons with Parkinson's disease and family care partners are needed before communication and cognitive difficulties become severe. In this study, the investigators will pilot test a novel dyadic intervention to help persons with Parkinson's disease and family care partners make future medical decisions. The investigators hypothesize the intervention will be feasible and acceptable among persons with Parkinson's disease and family care partners.

Detailed Description
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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 half an hour. 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 30 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.

Official Title
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Preparing Patient-Caregiver Dyads With Parkinson's Disease for End-of-Life Decision Making

Conditions
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Parkinson Disease

Intervention / Treatment
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* Behavioral: Parkinson's medical decision making support


Participation Criteria
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Eligibility Criteria
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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 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 Exclusion Criteria: Cannot see well enough to see words on a newspaper even with corrective lenses Used the intervention resources before Scored below a 28 on the telephone interview for cognitive status tool

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Intervention 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<br>All participants will complete an online medical decision making intervention, lasting about 30 minutes, and complete pre and post surveys. | Behavioral: Parkinson's medical decision making support<br>* 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.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change from baseline Advance Care Planning Engagement Survey at 2 weeks | Assesses knowledge, contemplation, self-efficacy, and readiness on a 5-point Likert scale. | Baseline, 2 weeks post intervention | 
| Intervention feasibility/acceptability | Ratings of ease of use, helpfulness, and likeliness of recommending the intervention to others on Likert-scales. | 2 weeks post intervention | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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end of life, medical decision making, advanced illness, family