TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury.

OBJECTIVE: To use a patient-centered approach or participatory action research design combined with advanced psychometrics to develop a comprehensive patient-reported outcomes (PRO) measurement system specifically for individuals with traumatic brain injury (TBI). This TBI Quality-of-Life (TBI-QOL) measurement system expands the work of other large PRO measurement initiatives, that is, the Patient-Reported Outcomes Measurement Information System and the Neurology Quality-of-Life measurement initiative. SETTING: Five TBI Model Systems centers across the United States. PARTICIPANTS: Adults with TBI. DESIGN: Classical and modern test development methodologies were used. Qualitative input was obtained from individuals with TBI, TBI clinicians, and caregivers of individuals with TBI through multiple methods, including focus groups, individual interviews, patient consultation, and cognitive debriefing interviews. Item pools were field tested in a large multisite sample (n = 675) and calibrated using item response theory methods. MAIN OUTCOMES MEASURES: Twenty-two TBI-QOL item banks/scales. RESULTS: The TBI-QOL consists of 20 independent calibrated item banks and 2 uncalibrated scales that measure physical, emotional, cognitive, and social aspects of health-related quality of life. CONCLUSIONS: The TBI-QOL measurement system has potential as a common data element in TBI research and to enhance collection of health-related quality-of-life and PRO data in rehabilitation research and clinical settings.

Traumatic brain injury and functional outcomes: does minority status matter?

OBJECTIVES: (1) to determine differences between minorities vs. non-minorities on demographic, injury and rehabilitation characteristics and functional outcomes at admission, discharge and 1-year post-injury and (2) to examine differences in functional outcome at 1-year post-injury among (African-Americans, Hispanics and Whites). DESIGN: Retrospective study. SETTING: Longitudinal data were extracted from the TBI Model Systems database. PARTICIPANTS: 4929 individuals with moderate-to-severe TBI (3354 Whites vs. 1575 Minorities: 1207 African-Americans and 368 Hispanics) hospitalized between 1989-2004. MAIN OUTCOME MEASURES: Functional outcomes at 1-year post-injury (Disability Rating Scale, Functional Independence Measure, Glasgow Outcome Scale-Extended and Community Integration Questionnaire). RESULTS: At discharge and 1-year post-injury, minorities had poorer functional outcomes compared with Caucasians on all measures. After controlling for sociodemographic, injury and functional characteristics at admission, Hispanics and African-Americans still showed worse functional outcomes at 1-year post-injury compared with Whites on the DRS, FIM and CIQ. There were no significant differences between African Americans and Hispanics. CONCLUSIONS: Minorities had significantly reduced long-term functional outcome after rehabilitation relative to Whites. It is imperative that rehabilitation professionals' consider factors related to poorer long-term functional outcome and work to improve the quality of life of minorities with TBI.

American Congress of Rehabilitation Medicine in 2006: embracing the future.

The American Congress of Rehabilitation Medicine (ACRM) modified its mission and structure in 1997 to become an organization focused on medical rehabilitation research. Initially, this transformation accelerated an already diminishing membership, a weakened financial condition, and some level of dysfunction within the organizational structure. In recent years, with the advent of evidence-based practice and the expectation that empirical research is critical to the survival of clinical specialties such as rehabilitation medicine, ACRM has become re-energized. New initiatives have been spawned that have led to stabilization and an influx of new members, a measurable improvement in the quality of scientific presentations at, and participation in, the annual meetings, efforts directed toward increasing the visibility and involvement of ACRM on an international level, programming directed toward early career scientists, strong public policy advocacy, and renewed and expanded inter-organizational partnerships. In addition, the financial position of ACRM has improved markedly and prospects toward long-term fiscal health and growth are "the new reality." ACRM has now moved significantly beyond the "survival" step of the Maslow hierarchy toward the goal of self-actualization.

Comparison of the Traumatic Brain Injury (TBI) Model Systems national dataset to a population-based cohort of TBI hospitalizations.

OBJECTIVE: To determine whether severity alone accounts for differences observed between a population-based cohort of acute care hospitalizations for traumatic brain injury (TBI) and the Traumatic Brain Injury Model Systems (TBIMS) national dataset. DESIGN: Prospective cohort. SETTING: Acute care hospitals in South Carolina and TBIMS rehabilitation centers. PARTICIPANTS: Subjects enrolled in the TBIMS national dataset and the South Carolina TBI Follow-up Registry (SCTBIFR). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Comparable variables in the 2 datasets included demographic characteristics, etiology of injury, initial Glasgow Coma Scale score, Abbreviated Injury Scale score for the head region derived from International Classification of Diseases codes, presence of computed tomography (CT) abnormalities, acute hospital length of stay, and payer source. RESULTS: As hypothesized, TBIMS participants showed greater initial injury severity, frequency of abnormal CT scans, and longer lengths of acute care hospitalization, explaining over 75% of cohort membership. Counter to a priori hypotheses, when all other factors were held constant, there were also differences in racial and ethnic background and insurance payer source. CONCLUSIONS: Differences between the TBIMS cohort and patients acutely hospitalized with TBI are primarily due to injury severity; however, an additional difference in payer source may need to be taken into account when generalizing findings. Results showed that TBIMS and SCTBIFR datasets are complementary, each having different strengths for understanding factors that impact long-term recovery after TBI. Recommendations are made for methodologic improvements in both data collection for the TBIMS and future outcome surveillance.

Functional outcomes from inpatient rehabilitation after traumatic brain injury: how do Hispanics fare?

OBJECTIVE: To examine the relation between Hispanic ethnicity and rehabilitation outcome in traumatic brain injury (TBI) survivors. DESIGN: Retrospective study. SETTING: Longitudinal dataset of the Traumatic Brain Injury Model Systems national database. PARTICIPANTS: Persons (N=3056; 2745 whites vs 311 Hispanics) with moderate to severe TBI hospitalized between 1989 and 2003. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Functional outcomes at discharge and 1-year follow-up (Disability Rating Scale [DRS], FIM instrument). Glasgow Outcome Scale-Extended (GOS-E), and the Community Integration Questionnaire (CIQ) were measured at follow-up only. RESULTS: At admission, Hispanics were less educated (P

A follow-up study of older adults with traumatic brain injury: taking into account decreasing length of stay.

OBJECTIVE: To examine age-related differences in rehabilitation outcomes following traumatic brain injury (TBI). DESIGN: Retrospective collaborative study. SETTING: Patients received acute neurotrauma and inpatient rehabilitation services at 1 of the 17 National Institute on Disability and Rehabilitation Research-designated Traumatic Brain Injury Model Systems (TBIMS) centers. PARTICIPANTS: A sample of 273 older patients (> or =55y) admitted for TBI were taken from the TBIMS National Database. Older patients were matched with subjects 44 years of age or younger, based on severity of injury (Glasgow Coma Scale score, length of coma, intracranial pressure elevations). Due to decreasing length of stay (LOS), only patients admitted from 1996 through 2002 were included. INTERVENTION: Inpatient interdisciplinary brain injury rehabilitation. MAIN OUTCOME MEASURES: Acute care LOS, inpatient rehabilitation LOS, admission and discharge FIM instrument and Disability Rating Scale (DRS) scores, FIM and DRS efficiency, acute and rehabilitative charges, and discharge disposition. RESULTS: One-way analyses of variance demonstrated a statistically significant difference between older and younger patients with respect to LOS in rehabilitation but not for acute care. Total rehabilitative charges, and admission and discharge DRS and FIM scores also showed statistically significant differences between groups. Older patients progressed with significantly less efficiency on both the DRS and FIM scales. Significantly more charges were generated per unit for older patients to improve on the DRS scale, but not the FIM scale. Using chi-square analysis, a statistically significant difference in rate of discharge to home was identified between older (80.5%) and younger (94.4%) patients. CONCLUSIONS: Results in this study are similar to those in earlier studies with smaller sample sizes. Major differences observed include significantly slower and more costly progress in inpatient rehabilitation for older patients with TBI, as well as a significantly lower rate of discharge to community for older patients. However, even with decreasing LOS in both settings, community discharge rate is still encouraging for older patients with TBI.

Five years after traumatic brain injury: a study of individual outcomes and predictors of change in function.

OBJECTIVE: Study functional changes between one and five years after traumatic brain injury (TBI). DESIGN: Prospective cohort. SETTING AND PARTICIPANTS: TBI Model Systems National Database subjects using cohort with complete one and five year data (n = 301). MAIN OUTCOME MEASURES: Disability Rating Scale (DRS) Level of Functioning and Employability Items. RESULTS: On Level of Functioning, 53 (18%) individuals improved, 228 (76%) stayed the same, and 20 (7%) worsened by more than one point from Year 1 to Year 5. On Employability, 50 (17%) individuals improved, 237 (79%) stayed the same, and 14 (5%) worsened by greater than one point. Level of Functioning improvement was predicted by FIM-Motor, FIM-Cognitive, Rey Auditory Verbal Learning Test, Symbol Digit Modalities Test (written and oral), and Wechsler Adult Intelligence Scale-Revised Block Design, and worsening predicted by Symbol Digit Modalities Test (written and oral). Improvement in Employability was predicted by race, while Glasgow Coma Scale Eye Opening was predictive of worsening. CONCLUSIONS: Although the majority did not demonstrate meaningful change on the DRS items from year 1 to 5, some individuals made dramatic gains and a minority declined. There are demographic and functional indicators present at one-year post-injury that may be predictive of subsequent change.

Race and productivity outcome after traumatic brain injury: influence of confounding factors.

OBJECTIVE: Investigate the impact of race on productivity outcome after traumatic brain injury (TBI) and evaluate the influence of confounding factors on this relationship. DESIGN: Inception cohort of 1083 adults with TBI for whom 1-year productivity follow-up data were available. RESULTS: Univariable logistic regression indicated that race was a significant predictor of productivity outcome after TBI. African Americans were 2.76 times more likely to be nonproductive than whites and other racial minorities were 1.92 times more likely to be nonproductive than whites. Multivariable logistic regression analyses revealed that the effect of race on employability was influenced by confounds with preinjury productivity, education level, and cause of injury. After adjustment for other predictors, African Americans were 2.00 times more likely to be nonproductive than whites and other racial minorities were 2.08 times more likely to be nonproductive than whites. The multivariable logistic regression model with all predictors except race accounted for 39% of the variability in productivity outcome (R2-Nagelkerke=0.39), whereas the full logistic regression model including race accounted for 41% of the variability in productivity outcome (R2-Nagelkerke=0.41); a difference of only 2%. CONCLUSION: Any effect of race on productivity is significantly influenced by confounding with preinjury productivity, education level, and cause of injury.

Measurement of quality of life in rehabilitation medicine: emerging issues.

The articles in the current supplement (Part II) present emerging issues in the measurement of quality of life (QOL). The articles were prepared based on presentations at a meeting held in November 2001. Part I (December 2002) provided important background information, definitions, and approaches that have been used in various rehabilitation populations. The articles in the current supplement are intended to provide information about new advances in QOL measurement. They review issues such as measuring QOL from the individual's perspective, adapting instruments for different cultures and illiteracy, and using advanced psychometric techniques to build a computer-adapted measurement system. Novel solutions are offered. We hope that this information can be used to set a research agenda for improving the measurement of QOL in rehabilitation medicine. The present article outlines these issues and provides a context for the information that has been presented in the 2 supplements.

Depression after traumatic brain injury: a National Institute on Disability and Rehabilitation Research Model Systems multicenter investigation.

OBJECTIVE: To identify the frequency and manifestations of depression after traumatic brain injury (TBI) and the factors that contribute to developing this mood disorder. DESIGN: A prospective, nationwide, multicenter study; 17 centers supplied data from medical records and patient responses on a standardized criterion instrument. SETTING: Traumatic Brain Injury Model Systems programs. PARTICIPANTS: A demographically diverse sample of 666 outpatients with TBI was evaluated 10 to 126 months after injury. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Depressive symptoms were characterized with the Neurobehavioral Functioning Inventory by using the Diagnostic and Statistical Manual of Mental Disorders (4th ed; DSM-IV) diagnostic framework. Analysis of variance and Pearson correlations were used to identify factors that were significantly related to depression. RESULTS: Fatigue (29%), distractibility (28%), anger or irritability (28%), and rumination (25%) were the most commonly cited depressive symptoms in the sample. Twenty-seven percent of patients with TBI met the prerequisite number (>/=5) of criterion A symptoms for a DSM-IV diagnosis of major depressive disorder. Feeling hopeless, feeling worthless, and difficulty enjoying activities were the 3 symptoms that most differentiated depressed from nondepressed patients. Patients who were unemployed at the time of injury and who were impoverished were significantly more likely to report DSM-IV criterion A symptoms than patients who were employed, were students, or were retired due to age. Time after injury, injury severity, and postinjury marital status were not significantly related to depression. CONCLUSIONS: Patients with TBI are at great risk for developing depressive symptoms. Findings provide empirical support for the inclusion of depression evaluation and treatment protocols in brain injury programs. Unemployment and poverty may be substantial risk factors for the development of depressive symptoms. Future research should develop biopsychosocial predictive models to identify high-risk patients and examine the efficacy of treatment interventions.

Violent traumatic brain injury: occurrence, patient characteristics, and risk factors from the Traumatic Brain Injury Model Systems project.

OBJECTIVES: To examine the occurrence of and characteristics associated with violent traumatic brain injury (TBI) in the Traumatic Brain Injury Model Systems (TBIMS) project for 4 of the 5 original Model Systems centers and to determine the patient characteristics of this group, as well as the risk factors for sustaining such an injury. DESIGN: Prospective evaluation of individuals with violent TBI over a 10-year period. SETTING: Four TBIMS centers. PARTICIPANTS: A total of 1,229 individuals who received acute hospitalization and inpatient rehabilitation care for TBI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The occurrence of a violent TBI. RESULTS: Twenty-six percent of the participants in the TBIMS project sustained a violent TBI. This type of injury was more common in African-American men who were single and slightly older than the average TBI patient, were unemployed before injury, and had had a previous TBI. A higher injury rate was noted in the earlier part of the evaluation period. Those who sustained a violent TBI had higher levels of caregiver burden and disability, as well as decreased productivity and community reintegration at rehabilitation discharge and at 1 and 2 years postinjury. CONCLUSIONS: The occurrence of violent TBI in the TBIMS project is consistent with national trends of decreasing incidence of violent injuries in the 1990s. These results present a profile of those who have been injured through violence. The relative risks for sustaining such an injury appear to be well defined when considering demographic and temporal factors.

Etiology of traumatic brain injury: characterization of differential outcomes up to 1 year postinjury.

OBJECTIVE: To characterize outcomes after traumatic brain injury (TBI) resulting from vehicular crashes, violence, falls, or other causes. DESIGN: Prospective, multicenter, longitudinal. SETTING: Seventeen Traumatic Brain Injury Model Systems. PARTICIPANTS: A total of 1,170 individuals with moderate to severe TBI with data from initial medical and rehabilitation stays and 1-year follow-up. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: At rehabilitation discharge, FIM instrument, Disability Rating Scale (DRS), and Rancho Los Amigo Levels of Cognitive Functioning Scale. At 1 year postinjury, FIM, DRS, Community Integration Questionnaire (CIQ), employment, residence, marital status, and seizure occurrence. RESULTS: The 4 etiology groups could be distinguished based on premorbid characteristics. Severity of injury indices indicated that individuals in vehicular crashes showed a trend toward incurring more severe injuries than the other 3 groups. At rehabilitation discharge, there were no functional differences between groups. At 1 year postinjury, the groups could be differentiated: individuals in violence-related TBI had higher unemployment rates and lower CIQ scores; persons in vehicular crashes reported the best functional and psychosocial outcomes; and individuals in the falls and other groups had outcomes lying between the vehicular and violence groups. CONCLUSION: This study elucidated important differences between persons with violence-related TBI and those with non-violence-related TBI. Further research is needed to find effective interventions to address these differences.

Quality of life measurement in rehabilitation medicine: building an agenda for the future.

In November 2001, a conference convened to discuss the state of the science of measuring of quality of life (QOL) in rehabilitation medicine. The meeting brought together leading researchers in areas of behavioral health and physical medicine and rehabilitation to address the fragmentation that exists across specialty areas and disciplines. The goal was to bridge terminology, techniques, and advances across the fields of behavioral and rehabilitation medicine. The 5 topic areas included: (1) general versus targeted measurement, (2) QOL in policy development, (3) measuring QOL from the patient's perspective, (4) cultural aspects of QOL measurement, and (5) the future of QOL research. This introduction synthesizes the information presented at the conference and provides context to the articles contained in this 2-part supplement.

Predictors of caregiver burden following traumatic brain injury.

PRIMARY OBJECTIVE: To investigate the relationship of demographic characteristics of the caregiver (i.e. race, age, household income, education) to caregiver burden, family needs, family functioning and social support to assess the predictors of caregiver burden. RESEARCH DESIGN: Information was obtained through mailed surveys and follow-up phone interviews. METHODS AND PROCEDURES: Participants were 24 African American and 21 White caregivers of individuals with traumatic brain injury who were at least 1-year post-injury. Measures administered included the Head Injury Family Interview, Family Needs Questionnaire, Family Assessment Device and the NON, a measure of social support. MAIN OUTCOMES AND RESULTS: Regression analyses revealed that importance of needs and percentage of needs met accounted for a significant amount of the variance in predicting affective/behavioural, cognitive and physical/dependency burden. CONCLUSIONS: Rehabilitation professionals need to provide support that includes ongoing assessment of needs and provides a resource for steering caregivers to potential sources for meeting those needs.

Telerehabilitation needs: a survey of persons with acquired brain injury.

OBJECTIVE: To survey individuals with acquired brain injury to assess multiple facets of interest, access, and familiarity necessary to implement new telerehabilitation technologies. DESIGN: Anonymous mail survey. SETTING: Community. PARTICIPANTS: Seventy-one respondents to a survey. These individuals had experienced acquired brain injury (predominantly severe traumatic brain injury [TBI]) and were living in the community. Surveys were mailed by a state chapter of the Brain Injury Association to a random selection of members with acquired brain injury. MAIN OUTCOME MEASURE: Survey designed specifically for this investigation. RESULTS: The survey responses indicate that there is great interest in the possibility of accessing telerehabilitative services among individuals with acquired brain injury. In particular, there was strong interest expressed in services that could be used to assist with problems in memory, attention, problem-solving, and activities of daily living. CONCLUSIONS: Telemedicine, and more specifically telerehabilitation, holds great promise as an adjunct to traditional clinical service delivery. Little research in this area has been applied, however, to individuals with acquired brain injuries. Although on the surface, telerehabilitation seems to be an appropriate assessment and treatment modality for individuals with brain injury, it will only succeed if those individuals have the interest-and the access-necessary to use new and evolving technologies.

Early cognitive status and productivity outcome after traumatic brain injury: findings from the TBI model systems.

OBJECTIVE: To evaluate the contribution of early cognitive assessment to the prediction of productivity outcome after traumatic brain injury (TBI) adjusted for severity of injury, demographic factors, and preinjury employment status. DESIGN: Inception cohort. SETTING: Six inpatient brain injury rehabilitation programs. PARTICIPANTS: A total of 388 adults with TBI whose posttraumatic amnesia (PTA) resolved before discharge from inpatient rehabilitation. INTERVENTIONS: Administered neuropsychologic tests during inpatient stay on emergence from PTA. Follow-up interview and evaluation. Predictor measures also determined. MAIN OUTCOME MEASURE: Productivity status at follow-up 12 months postinjury. RESULTS: Multiple logistic regression analysis revealed that preinjury productivity status, duration of PTA, education level, and early cognitive status each made significant, independent contributions to the prediction of productivity status at follow-up. When adjusted for all other predictors, persons scoring at the 75th percentile on early cognitive status (less impaired) had 1.61 times greater odds (95% confidence interval [CI], 1.07-2.41) of being productive follow-up than those scoring at the 25th percentile (more impaired). Without adjustment, persons scoring at the 75th percentile had 2.46 times greater odds (95% CI, 1.77-3.43) of being productive at follow-up. CONCLUSIONS: Findings support the utility of early cognitive assessment by using neuropsychologic tests. In addition to other benefits, early cognitive assessment makes an independent contribution to prediction of late outcome. Findings support the clinical practice of performing initial neuropsychologic evaluations after resolution of PTA.