NIH-funded study to develop measure of quality of life specific to caregivers of persons with TBI

Kessler FoundationApr 20 2013

Dr. Chiaravalloti receives $526,206 National Institutes of Health grant to study challenges faced by caregivers of persons with TBI

Kessler Foundation is one four sites participating in "Quality of Life in Caregivers of Traumatic Brain Injury: The Development of the TBI-CareQOL", a multi-site 5-year study funded by the National Institutes of Health/National Institute of Nursing Research (1R01NR013658-01). Nancy Chiaravalloti , PhD, co-investigator of the Kessler site, is also project director of the Northern New Jersey Traumatic Brain Injury System and director of TBI Research at Kessler Foundation.

The University of Michigan is the lead center for the study; Noelle Carlozzi, PhD, is principal investigator. The goal is to develop a measure of quality of life that is specific to caregivers of persons with traumatic brain injury (TBI). Although these caregivers have been identified as an underserved population in both civilian and in military life, there is a lack of measures of health-related quality of life (HRQOL) that are specific to these caregivers. "This study will result in a new tool that will help clinicians understand the issues these caregivers face," said John DeLuca, PhD, VP for Research and Training, "and identify the need for additional treatment and resources both the patients with TBI and their families."

This study has 3 phases. In the first phase, caregivers of persons with documented TBI participate in focus groups to discuss issues related to their quality of life. To assess the impact of TBI on quality of life, data are collected from the patient medical records on type of injury, cause of injury, severity of injury, lengths of stay, and possibly associated injuries. During the second phase, caregivers complete a draft measurement tool and the various questions are evaluated for appropriateness and utility, as well as other statistical properties. In the third phase, caregivers who completed the draft assessment tool are interviewed to evaluate their experience.

The TBI-CareQOL is targeted for use in caregivers of both civilian and military TBI. This will be utilized as a primary assessment measure in the congressionally mandated 15-year longitudinal study of caregivers in the military, and is a potential measure for inclusion in the TBI Model System (TBIS).