Traumatic Brain Injury Participatory Computer Adaptive Test Profile (TBI-PCAT)

Traumatic Brain Injury Participatory Computer Adaptive Test Profile (TBI-PCAT)

Survivors of traumatic brain injury (TBI) encounter barriers to participation in meaningful roles, activities, and relationships for weeks to years after their injury. The overall goal of this 5-year study  supported by the National Institute of Disability, Independent Living and Rehabilitation Research (NIDILRR) is to develop an efficient assessment that can inform clinicians, family members, and researchers about challenges to community participation, monitor social participation recovery and assess their needs to connect individuals with TBI to needed resources in the community. The TBI-PCAT study will use advanced psychometric technologies (Item Response Theory (IRT), Computer Adaptive Testing (CAT) and Machine Learning (ML) to develop the TBI-PCAT profile assessment for persons with TBI that span the severity spectrum and focus on key domains that include the activities you do, such as work and leisure activities, and the relationships you have, such as friendships and romantic relationships. The TBI-PCAT Profile will be comprised of items developed specifically for persons with TBI that assess their unique social participation challenges. The product of this work will be a tool for use in those with TBI for future research that monitors outcomes of care. The TBI-PCAT also will be used for evaluating interventions in future clinical trials.   

The study will be conducted in several phases which include:

1. Interviews and Focus Groups:

We will meet with individuals with TBI, their family members, and clinicians to identify important aspects of participation and develop questions for the assessment.

2. Testing and Refinement of the measure:

We will administer a large number of items to approximately 500 individuals with TBI from across the country to evaluate and refine the questions on the assessment and calibrate the scoring using advanced measurement methods. We will then administer the refined measure to additional individuals with TBI to assess the reliability and validity of the measure.

Study Contacts: Caitlin Rajala, MS (crajala@partners.org) and Camden Waterhouse, BS (cwaterhouse@partners.org)

Primary Investigators & Research Team:
Joseph Giacino, PhD, Principal Investigator
Lewis Kazis, ScD, Co-Principal  Investigator
Pengsheng Ni, MD, MPH Co-Investigator
Mary Slavin, PT, PhD Co-Investigator
Jeffrey Schneider, MD Co-Investigator
Michael Bergin, PhD, MBA Co-Investigator
Sarah Bannon, PhD Co-Investigator
Christopher Carter, PsyD Co-Investigator
Emily Evans, PT, PhD Co-Investigator
Kimberly Erler, OTR/L, PhD Co-Investigator
Gabriel Shapiro, PhD Consultant
Susan Connors, PhD Consultant
Oswald Mondejar, PhD Consultant
Caitlin Rajala, MS, Research Coordinator
Camden Waterhouse, BS, Research Coordinator
Nathan Fishbein, BS Research Coordinator

Rally Page (soon be published)