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 V2

Name File Type Size Last Modified
NeuroQol_Binder_12.20.2024.pdf application/pdf 445.2 KB 12/20/2024 10:08:AM
PIECE_ICPSR_Final_12.19.2024.xlsx application/vnd.openxmlformats-officedocument.spreadsheetml.sheet 186.7 KB 12/20/2024 11:54:AM
Phone_employmentsurvey.pdf application/pdf 93.2 KB 12/20/2024 12:12:PM

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/E213881V2

Project Description

Summary:  View help for Summary 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.
Funding Sources:  View help for Funding Sources 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:  View help for Subject Terms Parkinson's disease; employment; work
Geographic Coverage:  View help for Geographic Coverage United States
Time Period(s):  View help for Time Period(s) 10/18/2019 – 6/18/2024
Collection Date(s):  View help for Collection Date(s) 10/18/2019 – 6/18/2024
Universe:  View help for Universe Person's with Parkinson's disease of less than 5 years.
Data Type(s):  View help for Data Type(s) observational data; other; survey data

Methodology

Response Rate:  View help for Response Rate 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%).
Sampling:  View help for Sampling
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):  View help for Collection Mode(s) telephone interview; web-based survey
Scales:  View help for Scales Work Apgar, General Self-Efficacy, and Comprehensive Score for Financial Toxicity measures.

Unit(s) of Observation:  View help for Unit(s) of Observation Individuals

Related Publications

Download this project

Published Versions

V2 [2024-12-20]

V1 [2024-12-20]

Export Metadata

Dublin Core

DDI 2.5

Report a Problem

Found a serious problem with the data, such as disclosure risk or copyrighted content? Let us know.

This material is distributed exactly as it arrived from the data depositor. ICPSR has not checked or processed this material. Users should consult the investigator(s) if further information is desired.