Spaulding-Harvard Traumatic Brain Injury Model System

The goal of the Spaulding-Harvard Traumatic Brain Injury Model System (SH-TBIMS) is to establish a more person-centered approach to conceptualizing and evaluating long-term outcomes in individuals with severe disability after traumatic brain injury (sTBI). This project aims to give voice to persons with lived experience in how TBI outcomes are conceptualized and measured by engaging a diverse panel of traumatic brain injury (TBI) stakeholders, including individuals with TBI and their caregivers. Project objectives include: (1) promoting a shared understanding of the notion of “acceptable” outcome between consumers and professionals, (2) developing a brief telephone-based caregiver interview to detect changes in function that occur across the lifespan in individuals with sTBI, (3) establishing a standardized measure of “clinically-meaningful” change over time, and (4) promoting public awareness of existing obstacles to accessing care after sTBI and strategies to overcome them. Project outcomes include: (1) improved understanding of provider and consumer perspectives of “acceptable” outcome after sTBI, (2) expanded capacity to conduct long-term outcome assessment among individuals with sTBI, (3) increased understanding of the resources required to address the needs of TBI caregivers, and (4) greater awareness of existing roadblocks to accessing health services experienced by individuals with sTBI. Project outputs include a Conversation Guidebook About Outcome After Severe TBI to promote shared decision-making regarding goals of care between providers and caregivers of individuals with sTBI; brief telephone-administered caregiver questionnaires that provide greater knowledge on the chronic phase of recovery after sTBI, as well as improved understanding of the factors that impact caregiver effectiveness; and (3) user-friendly multimedia consumer and professional educational materials developed in partnership with TBI stakeholders.