Background: While technology for treating traumatic brain injury (TBI) continues to improve, unexplained variation in outcomes persists. A growing body of literature provides evidence for the influence of subjective experience on objective physiological processes. We worked with TBI survivors and their family/caregivers to develop a model of recovery that incorporates patients’ subjective experience with objective measures of functional status (FS) to investigate factors that foster recovery. We then developed a measure of FS that reflects the priorities and perspectives of the patient population. The purpose of this report is to present our process for establishing the reliability and validity of the FS measure.Methods: Through an iterative process we elicited from TBI survivors their priorities for evaluation and measurement of FS. We assembled their responses into an 18-item measure and administered the pilot survey to 68 people with TBI from support groups in Oregon. Final administration was a survey mailed to 837 TBI survivors. Reliability analyses were conducted to evaluate internal consistency. A Cronbach’s Alpha was calculated for each sub-construct of the scale. A Difficulty Function was calculated to compare patient responses to family responses within each construct. Content validity analysis was conducted comparing constructs and items from the measure to those of 11 established, validated TBI outcome measures. an Analysis of Variance (ANOVA) was conducted to investigate the relationship between survivors’ FS scores and their post-trauma socio-economic status.Results: There were 248 complete cases in the sample. Reliability analysis provided adequate inter-item correlations. Difficulty functions ranged from .69 to .47. Construct validity was established with 11 validated instruments used to evaluate TBI. The ANOVA revealed a significant difference between FS scores and post-trauma SES; survivors with lower FS scores experienced lower post-trauma SES.Conclusions: Our goal was to develop a measure of functional status following TBI using the advice and assistance of survivors of TBI and their families. In this paper we present our process for developing and assessing the reliability and validity of the Functional Status measure of the Bob Brown Scale. Future research will be use of the BBS in a prospective sample of TBI survivors.
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