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Significant mortality and morbidity were evident at 5 years postinjury. The deterioration in global outcomes observed regardless of age suggests that multiple influences contribute to poorer outcomes. Public health interventions intended to reduce post-acute inpatient rehabilitation mortality and morbidity rates will need to be multifaceted and age-specific.

Collaboration among investigators, centers, countries, and disciplines is essential to advancing the care for traumatic brain injury (TBI). It is thus important that we ''speak the same language.'' Great variability, however, exists in data collection and coding of variables in TBI studies, confounding comparisons between and analysis across different studies. Randomized controlled trials can never address the many uncertainties concerning treatment approaches in TBI. Pooling data from different clinical studies and high-quality observational studies combined with comparative effectiveness research may provide excellent alternatives in a cost-efficient way. Standardization of data collection and coding is essential to this end. Common data elements (CDEs) are presented for demographics and clinical variables applicable across the broad spectrum of TBI. Most recommendations represent a consensus derived from clinical practice. Some recommendations concern novel approaches, for example assessment of the intensity of therapy in severely injured patients. Up to three levels of detail for coding data elements were developed: basic, intermediate, and advanced, with the greatest level of detail attained in the advanced version. More detailed codings can be collapsed into the basic version. Templates were produced to summarize coding formats, explanation of choices, and recommendations for procedures. Endorsement of the recommendations has been obtained from many authoritative organizations. The development of CDEs for TBI should be viewed as a continuing process; as more experience is gained, refinement and amendments will be required. This proposed process of standardization will facilitate comparative effectiveness research and encourage high-quality meta-analysis of individual patient data.

Objective To determine whether the Traumatic Brain Injury Model Systems National Database (TBIMS-NDB) is representative of individuals aged 16 years and older admitted for acute, inpatient rehabilitation in the United States with a primary diagnosis of traumatic brain injury (TBI). Design Secondary analysis of existing datasets. Setting Acute inpatient rehabilitation facilities. Participants Patients 16 years of age and older with a primary rehabilitation diagnosis of TBI. Interventions None. Main Outcome Measure demographic characteristics, functional status and hospital length of stay. Results From October 2001 through December 2007 patients included in the TBIMS-NDB were largely representative of all individuals 16 years and older admitted for rehabilitation in the U.S. with a primary diagnosis of TBI. The major difference in distribution was age—the TBIMS-NDB cohort did not include as many patients over age 65 as were admitted for rehabilitation with a primary diagnosis of TBI in the United States. Distributional differences for age-related characteristics were observed; however, groups of patients partitioned at age 65 differed minimally, especially the under 65 subset. Regardless of age, the proportion of patients with a rehabilitation stay of 1-9 days was larger nationwide. Nationwide admissions showed an age distribution similar to patients discharged alive from acute care with moderate, severe or penetrating TBI. The proportion of patients age 70 and older admitted for TBI rehabilitation in the United States increased every year, a trend that was not evident in the general population, TBIMS-NDB or among TBI patients in acute care. Conclusions These results provide substantial empirical evidence that the TBIMS-NDB is representative of patients receiving inpatient rehabilitation for TBI in the U.S. Researchers utilizing the TBIMS-NDB may want to adjust statistically for the lower percentage of patients over age 65 or those with stays less than 10 days.