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

NCT ID: NCT05084209

Last Updated: 2025-02-10

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

33 participants

Study Classification

INTERVENTIONAL

Study Start Date

2024-06-26

Study Completion Date

2025-01-27

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 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.

Conditions

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Parkinson Disease

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

NONE

Study Groups

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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.

Group Type EXPERIMENTAL

Parkinson's medical decision making support

Intervention Type BEHAVIORAL

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.

Interventions

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Parkinson's medical decision making support

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.

Intervention Type BEHAVIORAL

Eligibility Criteria

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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


* 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
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Purdue University

OTHER

Sponsor Role lead

Responsible Party

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Jiayun Xu

Assistant Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Jiayun Xu

Role: PRINCIPAL_INVESTIGATOR

Purdue University

Locations

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Purdue University

West Lafayette, Indiana, United States

Site Status

Countries

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United States

Other Identifiers

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K23NR019099-01A1

Identifier Type: NIH

Identifier Source: org_study_id

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