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

NCT05084209 | Completed

• 1 other identifier: K23NR019099-01A1
• Study Type: interventional
• Target: 33
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Parkinson Disease

Keywords

end of life; medical decision making; advanced illness; family

Outcome Measures

Primary Outcomes (2)

• 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

Study Arms (1)

Parkinson's medical decision making support intervention group

EXPERIMENTAL

All participants will complete an online medical decision making intervention, lasting about 60 minutes, and complete pre and post surveys.

Behavioral: Parkinson's medical decision making support

Interventions

Parkinson's medical decision making support 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.

Parkinson's medical decision making support intervention group

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• 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

You may not qualify if:

• 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

Sponsors & Collaborators

• Purdue University: lead

Study Sites (1)

Purdue University

West Lafayette, Indiana, 47907-2069, United States

Location

MeSH Terms

Conditions

Parkinson Disease; Death

Condition Hierarchy (Ancestors)

Parkinsonian Disorders; Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• Jiayun Xu

  Purdue University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor

Study Record Dates

• First Submitted: September 25, 2021
• First Posted: October 19, 2021
• Study Start: June 26, 2024
• Primary Completion: August 27, 2024
• Study Completion: January 27, 2025
• Last Updated: February 10, 2025

Record last verified: 2025-02

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)