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RRTC Employment for People with Physical Disabilities - Parkinson's Intervening Early Concerning Employment (PIECE) (Aims 2 and 3)
Principal Investigator(s): View help for Principal Investigator(s) Miriam R. Rafferty, Northwestern University
Version: View help for Version V1
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Project Citation:
Rafferty, Miriam R. RRTC Employment for People with Physical Disabilities - Parkinson’s Intervening Early Concerning Employment (PIECE) (Aims 2 and 3). Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2024-12-20. https://doi.org/10.3886/E213881V1
Project Description
Summary:
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The RRTC on Employment for People with Physical Disabilities is a training grant that includes four separate projects focusing on issues related to employment for those with physical disabilities. The Parkinson's Intervening Early Concerning Employment (PIECE) study aims to learn about how people with Parkinson's disease address employment challenges over time, and what resources they use to help them address these issues.
This was a three year prospective, longitudinal, observational study of 60 individuals with early Parkinson's disease with assessments every six months. The purpose of this study was to expand our knowledge on how proactive job accommodations and healthcare services benefit people with PD. This data was used to identify and describe the components of employment-related resources or interventions that were perceived to provide the greatest value.
This was a three year prospective, longitudinal, observational study of 60 individuals with early Parkinson's disease with assessments every six months. The purpose of this study was to expand our knowledge on how proactive job accommodations and healthcare services benefit people with PD. This data was used to identify and describe the components of employment-related resources or interventions that were perceived to provide the greatest value.
Funding Sources:
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United States Department of Health and Human Services. Administration for Community Living. National Institute on Disability, Independent Living, and Rehabilitation Research (PI: Heinemann) (90RTEM000101)
Scope of Project
Subject Terms:
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Parkinson's disease; employment; work
Geographic Coverage:
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United States
Time Period(s):
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10/18/2019 – 6/18/2024
Collection Date(s):
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10/18/2019 – 6/18/2024
Universe:
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Person's with Parkinson's disease of less than 5 years.
Data Type(s):
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observational data;
other;
survey data
Methodology
Response Rate:
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A total of 60 participants consented to participate in the study. Data collection for each participant was conducted on a bi-annual basis over the course of three years with a total of seven timepoints of data collection. Data collection methods included a structured phone interview and online survey.
Timepoint 1: 60/60 (100%) ; Timepoint 2: 55/60 (92%); Timepoint 3: 56/60 (93%); Timepoint 4: 53/60 (88%); Timepoint 5: 49/60 (82%); Timepoint 6: 51/50 (85%); Timepoint 7: 45/50 (75%).
Timepoint 1: 60/60 (100%) ; Timepoint 2: 55/60 (92%); Timepoint 3: 56/60 (93%); Timepoint 4: 53/60 (88%); Timepoint 5: 49/60 (82%); Timepoint 6: 51/50 (85%); Timepoint 7: 45/50 (75%).
Sampling:
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Eligibility criteria included participants that will live in the Chicagoland area,
or elsewhere in the United States if they are willing to receive services remotely
from SRAlab. Participants will be English-speaking adults
over the age of 18. Participants
will have a diagnosis of early PD, defined as less than 5 years since
diagnosis. Participants
will be currently employed and will wish to remain employed for at least 3
years.
Participant recruitment were individuals
with early PD with a goal of consenting up to 60 participants total. Participants
will be recruited from the Northwestern Medicine (NM) Parkinson’s Disease and
Movement Disorders (PDMD) Center, the
Parkinson’s Disease and Movement Disorders Rehabilitation Program at the
Shirley Ryan AbilityLab (SRAlab), PD support and exercise groups in the greater
Chicagoland area, and nationally through online and social media sources.Recruitment
strategies included visiting exercise and support
groups to advertise the study and distributing research flyers directly to
nurses, physicians, allied health professionals, and clinic staff at NM and
SRAlab. Additionally, flyers were included in ‘new patient’ folders for
patients receiving new evaluations at NM or SRAlab PDMD programs. If needed, the research team will
also provide flyers to people with PD participating in IRB-approved SRAlab and
Northwestern University research registries indicating their willingness to be
contacted for possible research participation.
Collection Mode(s):
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telephone interview;
web-based survey
Scales:
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Work Apgar, General Self-Efficacy, and Comprehensive Score for Financial Toxicity measures.
Unit(s) of Observation:
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Individuals
Related Publications
Published Versions
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