Whiteneck, Gale G.

This study aims to characterize the patterns of functional change experienced between 5 and 10 years after moderate-severe traumatic brain injury (TBI). The study included TBI Model Systems national database participants ( N = 372) at six sites who experienced TBI, received inpatient rehabilitation, and were followed at 5 and 10 years post-TBI. Outcome measures included self- or proxy-reported Functional Independence Measure (FIM TM ) structured interview at 5 and 10 years post-TBI and domain change indices (DCIs) at 10 years to assess subjective change over the previous 5 years. When all seven FIM and subjective DCI subscales were considered together, 69% reported improvement in at least one subscale and 41% reported decline in at least one subscale; 51% reported more domains improved than declined, and 20% reported more domains declined than improved. Age at injury, post-traumatic amnesia duration, FIM, and depression and anxiety at year 5 were associated with FIM change and DCI measures. Although most persons with moderate-severe TBI do not experience widespread change from year 5 to 10 on individual FIM subscales or perceived domain-specific subscales, the vast majority do report change in one or more domains, with more improvement than decline and more change in subjective DCI than in FIM. Clinicians and researchers should be alert to the possibility of both positive and deleterious changes many years after TBI.

Medical conditions co-occurring with traumatic brain injury (TBI) are associated with outcomes, and comorbidity indices such as Charlson and Elixhauser are used in TBI research, but they are not TBI specific. The purpose of this research was to develop an index or indices of medical conditions, identified in acute care after moderate to severe TBI, that are associated with outcomes at rehabilitation discharge. Using the TBI Model Systems National Database, the International Classification of Diseases, Ninth Revision (ICD-9) and Tenth Revision (ICD-10) codes of 8988 participants were converted to Healthcare Cost and Utilization Project (HCUP) diagnostic categories. Poisson regression models were built predicting Disability Rating Scale and Functional Independence Measure Cognitive and Motor subscale scores from HCUP categories after controlling for demographic and injury characteristics. Unweighted, weighted, and anchored indices based on the outcome models predicted 7.5–14.3% of the variance in the observed outcomes. When the indices were applied to a new validation sample of 1613 cases, however, only 2.6–6.6% of the observed outcomes were predicted. Therefore, no models or indices were recommended for future use, but several study findings are highlighted suggesting the importance and the potential for future research in this area.