Identifying the Best Measure of Participation

Project Type
Modular (Joint)
Principal Investigator Name
Gale Whiteneck
Principal Investigator Email
Start Date:
End Date:
Target Population(s):
People with SCI who are participating in the National SCI Model Systems Database
Project Website:
The purpose of this Participation Module in the SCI Model Systems is to identify a psychometrically sound, comprehensive measure of participation that can be agreed upon as the standard measure of participation for use in the SCI Model Systems National Database, SCI interventional research targeting improvements in participation, and other future SCI outcomes research. The study addresses the following research questions: 1. Which existing tool is the best measure of participation for SCI? 2. What dimensions of participation are identified in the pool of items from established participation measures? 3. Is a new combination of items from existing tools the best measure of participation in SCI? 4. What is the relationship between objective and subjective participation measures in SCI? 5. What is the relationship of the identified best measure of SCI participation to other measures of participation, other SCI outcome measures, and demographic and injury characteristics of people with SCI? 6. Can procedures be developed to convert scores on the identified best measure of SCI participation to equivalent scores on other existing participation measures in order to maximize the utility of past participation research and allow the use of historical data collected in the SCI National Database along with the implementation of the new measure? The research design is a cohort study conducted using a survey of individuals included in the National SCI Database who are interviewed using the study questionnaire at the same time that routine National SCI Database data collection occurs. Collaborating SCI Model Systems add the study questionnaire to their routine data collection as they interview National SCI Database cases who are crossing their 1st, 5th, 10th, 15th, 20th, 25th, or 30th anniversary of injury. Test-retest reliability and subject-proxy agreement is also assessed on sub-samples of cases at the lead center. The study questionnaire includes items from five of the most promising, recently developed participation measures, including the Participation Assessment with Recombined Tools – Objective, Subjective, Perceptions (PART-OSP), the Community Participation Index (CPI), the Community Integration Measure (CIM), the Participation Measure for Post-Acute Care (PM-PAC), and the Participation Profile (PAR-PRO). Since the study questionnaire is administered in conjunction with routine SCI Model System data collection, all the variables included in the core National SCI Database are also available for study analysis. The study questionnaire will be administered to 625 individual with SCI using a Computer Assisted Telephone Interview (CATI) program with a live syllabus and associated database.