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WECARE APD: Assessing a Single Multidisciplinary Team Visit for Atypical Parkinsonian Disorders

Not Applicable
Not yet recruiting
Conditions
Parkinson Plus
Registration Number
NCT06836921
Lead Sponsor
Western University
Brief Summary

Atypical Parkinsonian disorders (APD) are a group of brain disorders that look like Parkinson's disease but progress faster and don't respond well to common treatments like levodopa. These conditions include Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), and Multiple System Atrophy (MSA). Caring for APD patients is especially challenging because the symptoms worsen quickly and require multiple specialists, often leading to separate visits with different doctors and therapists. This not only increases the burden on patients and caregivers but also results in high medical costs. Despite the serious impact of APD, there is no proven care model that significantly improves the quality of life for patients and their caregivers.

To address this, the investigator team has created a novel type of clinic that brings together a team of specialists in a shared appointment to provide comprehensive care in one visit. This study aims to test whether an early visit with this team, in addition to regular medical care, can improve quality of life, help patients manage their symptoms better, and reduce the stress on caregivers. The investigators will conduct a six-month study with two groups: one will receive the multidisciplinary care visit right away, while the other will continue with regular care and receive the visit after six months. Patients and caregivers will fill out questionnaires about their well-being at the beginning, after one month, and after six months. The study will also measure how practical it is to run this type of clinic, making sure enough people participate, complete the required surveys, and stay in the study.

This will be the first study to test whether a team-based care model is practical and beneficial for APD patients and their caregivers. If successful, it could serve as a foundation for larger studies and potentially improve care for other complex neurological conditions in the future.

Detailed Description

Not available

Recruitment & Eligibility

Status
NOT_YET_RECRUITING
Sex
All
Target Recruitment
30
Inclusion Criteria

Not provided

Exclusion Criteria

Not provided

Study & Design

Study Type
INTERVENTIONAL
Study Design
PARALLEL
Primary Outcome Measures
NameTimeMethod
Percentage of Eligible Participants Willing to be RandomizedFrom screening to enrollment , 12 months after study start

Definition: The proportion of eligible participants who consent to randomization in the study.

Measurement:

Total number of eligible participants approached for the study. Number of participants who provide informed consent and agree to be randomized.

Formula:

Percentage Willing=( Total Eligible Participants Approached Participants Consented and Randomized )×100

Percentage of Participants Completing Outcome AssessmentAt 6 months after randomization

Definition: The proportion of participants who successfully complete all required outcome assessments at designated time points.

Measurement:

Tracking the number of participants who complete each outcome assessment. Comparison of completion rates across different study arms.

Formula:

Completion Rate=(Participants Who Complete All Required Assessments Total Participants Enrolled)×100

Satisfaction survey (Quantitative)After 6 months of randomization

Response Categories (5-point Likert scale):

Very satisfied Satisfied Neutral Unsatisfied Very unsatisfied

Analysis Approach:

Responses will be dichotomized into:

Satisfied: Very satisfied + Satisfied Not Satisfied: Neutral + Unsatisfied + Very unsatisfied The proportion of participants in each category will be calculated.

Formula:

Satisfaction Rate

=(Satisfied Responses Total Responses)×100

Secondary Outcome Measures
NameTimeMethod
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