Menopause and Traumatic Brain Injury: A NIDILRR Collaborative Traumatic Brain Injury Model Systems Study.

OBJECTIVE: To examine the experience of menopause symptoms in women with traumatic brain injury (TBI). DESIGN: Cross-sectional descriptive study. SETTING: Five sites of the TBI Model Systems (TBIMS) program. PARTICIPANTS: Participants were 210 women, aged 40-60 years, who were not taking systemic hormones and did not have both ovaries removed: 61 participants were enrolled in the TBIMS, who were at least 2 years post-TBI and living in the community. One hundred forty-nine participants without TBI were recruited from a research registry and the metropolitan Detroit community. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: A checklist comprised of 21 menopause symptoms assessing 4 symptom clusters (vasomotor, somatic, psychological, and cognitive). RESULTS: TBI and non-TBI groups did not significantly differ and showed small effect sizes on vasomotor symptoms. On the remaining symptom clusters, women with TBI showed greater presence and severity of symptoms than women without TBI, as well as fewer differences between premenopausal and postmenopausal women on those symptoms. A profile indicating an additive or potentiating effect of TBI on menopause symptoms was not observed. CONCLUSIONS: Findings support a conceptual model of menopause and TBI indicating that symptoms most closely associated with estrogen decline are similar for women with and without TBI, whereas symptoms that overlap with common TBI sequelae are generally more frequent and severe among these women. Likely because of lower baseline of symptoms premenopause, postmenopausal women without TBI reported more numerous and severe symptoms relative to their premenopausal counterparts without TBI. Overall, it may be that women without TBI experience menopause as more of a "change" of life, whereas women with TBI chronically face significantly more of these symptoms than women without TBI.

Longitudinal Investigation of Alexithymia as a Predictor of Empathy, Emotional Functioning, Resilience, and Life Satisfaction 2 Years After Brain Injury.

OBJECTIVE: To examine the unique contribution of alexithymia at 1 year after traumatic brain injury (TBI) to the prospective prediction of emotional and social health outcomes at 2 years after injury. DESIGN: Multicenter, longitudinal cohort study. SETTING: Data were collected during year 1 and year 2 postinjury follow-up interviews across 4 TBI Model System centers. PARTICIPANTS: Persons with TBI (N=175; 134 men and 41 women) who had English fluency and were capable of providing self-reported data. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Primary independent variable was the Toronto Alexithymia Scale-20. Outcome measures included the Interpersonal Reactivity Index, National Institute of Health Toolbox Emotion Battery Anger, Difficulty with Emotion Regulation Scale, Connor-Davidson Resilience Scale, Posttraumatic Stress Disorder Checklist - Civilian, Satisfaction with Life Scale, General Anxiety Disorder-7, Patient Health Questionnaire 9, suicidal ideation, and problematic substance use. RESULTS: Simple adjusted models demonstrated that after controlling for the specific outcome at year 1, Toronto Alexithymia Scale-20 scores significantly predicted year 2 scores for perspective-taking, physical aggression, emotional dysregulation, resilience, anxiety, depression, and suicidal ideation. All of these predictive findings except for physical aggression were maintained in the fully adjusted models that also controlled for age, sex, education level, number of prior TBIs, and motor and cognitive functioning. CONCLUSIONS: Compared with those with lower alexithymia scores, persons with TBI who had higher alexithymia scores at 1 year after injury reported poorer emotional health at 2 years after TBI, even after controlling for year 1 outcome scores, sociodemographic characteristics, and injury-related factors. These results support the need to assess for elevated alexithymia and to provide interventions targeting alexithymia early in the TBI recovery process.

An Umbrella Review of Self-Management Interventions for Health Conditions With Symptom Overlap With Traumatic Brain Injury.

OBJECTIVE: To synthesize evidence for the effectiveness of self-management interventions for chronic health conditions that have symptom overlap with traumatic brain injury (TBI) in order to extract recommendations for self-management intervention in persons with TBI. DESIGN: An umbrella review of existing systematic reviews and/or meta-analyses of randomized controlled trials or nonrandomized studies targeting self-management of chronic conditions and specific outcomes relevant to persons with TBI. METHOD: A comprehensive literature search of 5 databases was conducted using PRISMA guidelines. Two independent reviewers conducted screening and data extraction using the Covidence web-based review platform. Quality assessment was conducted using criteria adapted from the Assessing the Methodological Quality of Systematic Reviews-2 (AMSTAR-2). RESULTS: A total of 26 reviews met the inclusion criteria, covering a range of chronic conditions and a range of outcomes. Seven reviews were of moderate or high quality and focused on self-management in persons with stroke, chronic pain, and psychiatric disorders with psychotic features. Self-management interventions were found to have positive effects on quality of life, self-efficacy, hope, reduction of disability, pain, relapse and rehospitalization rates, psychiatric symptoms, and occupational and social functioning. CONCLUSIONS: Findings are encouraging with regard to the effectiveness of self-management interventions in patients with symptoms similar to those of TBI. However, reviews did not address adaptation of self-management interventions for those with cognitive deficits or for populations with greater vulnerabilities, such as low education and older adults. Adaptations for TBI and its intersection with these special groups may be needed.

Alexithymia Prevalence, Characterization, and Associations With Emotional Functioning and Life Satisfaction: A Traumatic Brain Injury Model System Study.

OBJECTIVES: Alexithymia an emotional processing deficit that interferes with a person's ability to recognize, express, and differentiate emotional states. Study objectives were to (1) determine rates of elevated alexithymia among people with moderate-to-severe traumatic brain injury (TBI) 1-year post-injury, (2) identify demographic and injury-related variables associated with high versus low-average levels of alexithymia, and (3) examine associations among alexithymia with other aspects of emotional functioning and life satisfaction. SETTING: Data were collected during follow-up interviews across four TBI Model System (TBIMS) centers. PARTICIPANTS: The sample consisted of 196 participants with moderate-to-severe TBI enrolled in the TBIMS. They were predominately male (77%), White (69%), and had no history of pre-injury mental health treatment (66.3%). DESIGN: Cross-sectional survey data were obtained at study enrollment and 1-year post-injury. MAIN MEASURES: Toronto Alexithymia Scale-20 (TAS-20) as well as measures of anger, aggression, hostility, emotional dysregulation, post-traumatic stress, anxiety, depression, resilience and life satisfaction. Sociodemographic information, behavioral health history and injury-related variables were also included. RESULTS: High levels of alexithymia (TAS-20 score > 1.5 standard deviation above the normative mean) were observed for 14.3%. Compared to individuals with low/average levels of alexithymia, the high alexithymia group tended to have lower levels of education. At 1-year follow-up, high TAS-20 scores were strongly associated with emotional dysregulation and post-traumatic stress; moderately associated with anger, hostility, depression, anxiety, lower resilience and lower satisfaction with life; and weakly associated with aggression. CONCLUSION: These findings provide further evidence that alexithymia is associated with poor emotional functioning and life satisfaction after TBI. Longitudinal studies are needed to determine if alexithymia is a risk factor that precipitates and predicts worse emotional outcomes in the TBI population. This line of work is important for informing treatment targets that could prevent or reduce of psychological distress after TBI.

Predictors of Multidimensional Profiles of Participation After Traumatic Brain Injury: A TBI Model Systems Study.

OBJECTIVES: To identify personal, clinical, and environmental factors associated with 4 previously identified distinct multidimensional participation profiles of individuals following traumatic brain injury (TBI). SETTING: Community. PARTICIPANTS: Participants (n = 408) enrolled in the TBI Model Systems (TBIMS) Participation Module, all 1 year or more postinjury. DESIGN: Secondary data analysis of cross-sectional data from participants in a multicenter TBIMS module study on participation conducted between May 2006 and September 2007. Participants provided responses to questionnaires via a telephone interview at their study follow-up (1, 2, 5, 10, or 15 years postinjury). MAIN MEASURES: Participants provided responses to personal (eg, demographic), clinical (eg, function), environmental (eg, neighborhood type), and participation measures to create multidimensional participation profiles. Data from measures collected at the time of injury (preinjury questionnaire, injury characteristics) were also included. The primary outcome was assignment to one of 4 multidimensional participation profile groups based on participation frequency, importance, satisfaction, and enfranchisement. The measures used to develop the profiles were: Participation Assessment with Recombined Tools-Objective, Importance, and Satisfaction scores, each across 3 domains (Productivity, Social Relationships, Out and About in the Community) and the Enfranchisement Scale (contributing to one's community, feeling valued by the community, choice and control). RESULTS: Results of the multinomial regression analysis, with 4 distinct participation profile groups as the outcome, indicated that education, current employment, current illicit drug use, current driving status, community type, and Functional Independence Measure Cognitive at follow-up significantly distinguished participation profile groups. Findings suggest a trend toward differences in participation profile groups by race/Hispanic ethnicity. CONCLUSIONS: Understanding personal, clinical, and environmental factors associated with distinct participation outcome profiles following TBI may provide more personalized and nuanced guidance to inform rehabilitation intervention planning and/or ongoing clinical monitoring.

Who enrolls and why? Examining center-specific underlying patterns behind enrollment: a New York City-based traumatic brain injury model systems study.

BACKGROUND: To elucidate the sociodemographic and study factors involved in enrollment in the Traumatic Brain Injury Model System (TBIMS) database, this study examined the effect of a variety of variables on enrollment at a local TBIMS center. METHODS: A sample of 654 individuals from the local TBIMS center was studied examining enrollment by age, gender, race, ethnicity, homelessness status at date of injury, history of homelessness, health insurance status, presence of social support, primary language, consenting in hospital or after discharge, and the need for an interpreter. Binary logistic regression was conducted to identify variables that predict center-based enrollment into TBIMS. RESULTS: Results demonstrated that older age was associated with decreasing enrollment (OR = 0.99, p = 0.01), needing an interpreter made enrollment less likely (OR = 0.33, p < 0.01), being primarily Spanish speaking predicted enrollment (OR = 3.20, p = 0.02), Hispanic ethnicity predicted enrollment (OR = 7.31, p = 0.03), and approaching individuals in the hospital predicted enrollment (OR = 6.94, p < 0.01). Here, OR denotes the odds ratio estimate from a logistic regression model and P denotes the corresponding p-value. CONCLUSIONS: These results can be useful in driving enrollment strategies at this center for other similar TBI research, and to contribute a representative TBI sample to the national database.

Assessing menopause symptoms in women with traumatic brain injury: the development and initial testing of a new scale.

With greater survival rates after catastrophic injury, more women with traumatic brain injury (TBI) are living longer than ever. However, knowledge about this transition in these women is largely unexamined and there are no scales that have been developed to assess the experience of symptoms. To address this gap, we developed and tested a new scale of menopause symptoms in midlife women with TBI. We selected candidate items from two existing measures based on feedback from focus group discussions with seven women with TBI. Twenty candidate items were tested in cognitive interviews with six women with TBI/1 non-TBI. Then, these were field tested with 221 participants (TBI, n = 68; non-TBI, n = 153) recruited from registries. Rasch analysis and convergent validity testing were used to evaluate the new scale. Results of the Rasch analysis indicate that overall, the scale fits well the Rasch model with evidence for unidimensionality. Differential item functioning indicated that the scale performed equally well for women with and without TBI and distinguished pre- and post-menopausal states. Convergent validity was found in the expected directions. These findings support further development of the new scale to understand the experience of menopause symptoms among women with TBI.

Spatiotemporal profile of atrophy in the first year following moderate-severe traumatic brain injury.

Traumatic brain injury (TBI) triggers progressive neurodegeneration resulting in brain atrophy that continues months-to-years following injury. However, a comprehensive characterization of the spatial and temporal evolution of TBI-related brain atrophy remains incomplete. Utilizing a sensitive and unbiased morphometry analysis pipeline optimized for detecting longitudinal changes, we analyzed a sample consisting of 37 individuals with moderate-severe TBI who had primarily high-velocity and high-impact injury mechanisms. They were scanned up to three times during the first year after injury (3 months, 6 months, and 12 months post-injury) and compared with 33 demographically matched controls who were scanned once. Individuals with TBI already showed cortical thinning in frontal and temporal regions and reduced volume in the bilateral thalami at 3 months post-injury. Longitudinally, only a subset of cortical regions in the parietal and occipital lobes showed continued atrophy from 3 to 12 months post-injury. Additionally, cortical white matter volume and nearly all deep gray matter structures exhibited progressive atrophy over this period. Finally, we found that disproportionate atrophy of cortex along sulci relative to gyri, an emerging morphometric marker of chronic TBI, was present as early as 3 month post-injury. In parallel, neurocognitive functioning largely recovered during this period despite this pervasive atrophy. Our findings demonstrate msTBI results in characteristic progressive neurodegeneration patterns that are divergent across regions and scale with the severity of injury. Future clinical research using atrophy during the first year of TBI as a biomarker of neurodegeneration should consider the spatiotemporal profile of atrophy described in this study.

Societal Participation of People With Traumatic Brain Injury Before and During the COVID-19 Pandemic: A NIDILRR Traumatic Brain Injury Model Systems Study.

OBJECTIVE: To examine the effect of the COVID-19 pandemic on societal participation in people with moderate-to-severe traumatic brain injury (TBI). DESIGN: Cross-sectional retrospective cohort. SETTING: National TBI Model Systems centers, United States. PARTICIPANTS: TBI Model Systems enrollees (N=7003), ages 16 and older and 1-30 years postinjury, interviewed either prepandemic (PP) or during the pandemic (DP). The sample was primarily male (72.4%) and White (69.5%), with motor vehicle collisions as the most common cause of injury (55.1%). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The 3 subscales of the Participation Assessment with Recombined Tools-Objective: Out and About (community involvement), Productivity, and Social Relations. RESULTS: Out and About, but not Productivity or Social Relations, scores were appreciably lower among DP participants compared to PP participants (medium effect). Demographic and clinical characteristics showed similar patterns of association with participation domains across PP and DP. When their unique contributions were examined in regression models, age, self-identified race, education level, employment status, marital status, income level, disability severity, and life satisfaction were variably predictive of participation domains, though most effects were small or medium in size. Depression and anxiety symptom severities each showed small zero-order correlations with participation domains across PP and DP but had negligible effects in regression analyses. CONCLUSIONS: Consistent with the effect of COVID-19 on participation levels in the general population, people with TBI reported less community involvement during the pandemic, potentially compounding existing postinjury challenges to societal integration. The pandemic does not appear to have altered patterns of association between demographic/clinical characteristics and participation. Assessing and addressing barriers to community involvement should be a priority for TBI treatment providers. Longitudinal studies of TBI that consider pandemic-related effects on participation and other societally linked outcomes will help to elucidate the potential longer-term effect the pandemic has on behavioral health in this population.

Comparison of Informational and Educational Resource Provision for Individuals Living With Traumatic Brain Injury Based on Language, Nativity, and Neighborhood.

OBJECTIVE: To examine a resource provision program for individuals living with moderate-to-severe traumatic brain injury (TBI), using a comparison of the resources provided across social differences of language, nativity, and neighborhood. SETTING: The Rusk Rehabilitation TBI Model System (RRTBIMS) collects data longitudinally on individuals from their associated private and public hospitals, located in New York City. PARTICIPANTS: A total of 143 individuals with TBI or their family members. DESIGN: An observational study of relative frequency of resource provision across variables of language, nativity, and neighborhood, using related-samples nonparametric analyses via Cochran's Q test. MAIN MEASURES: Variables examined were language, place of birth, residence classification as medically underserved area/population (MUA), and resource categories. RESULTS: Results indicate that US-born persons with TBI and those living in medically underserved communities are provided more resources than those who are born outside the United States or reside in communities identified as adequately medically served. Language was not found to be a factor. CONCLUSION: Lessons learned from this research support the development of this resource provision program, as well as guide future programs addressing the gaps in health information resources for groups negatively impacted by social determinants of health (SDoH). An approach with immigrant participants should take steps to elicit questions and requests, or offer resources explicitly. We recommend research looking at what interpreter strategies are most effective and research on SDoH in relation to the dynamic interaction of variables in the neighborhood setting.

T1 and T2 quantification using magnetic resonance fingerprinting in mild traumatic brain injury.

OBJECTIVES: To assess whether MR fingerprinting (MRF)-based relaxation properties exhibit cross-sectional and prospective correlations with patient outcome and compare the results with those from DTI. METHODS: Clinical imaging, MRF, and DTI were acquired in patients (24 ± 10 days after injury (timepoint 1) and 90 ± 17 days after injury (timepoint 2)) and once in controls. Patient outcome was assessed with global functioning, symptom profile, and neuropsychological testing. ADC and fractional anisotropy (FA) from DTI and T1 and T2 from MRF were compared in 12 gray and white matter regions with Mann-Whitney tests. Bivariate associations between MR measures and outcome were assessed using the Spearman correlation and logistic regression. RESULTS: Data from 22 patients (38 ± 12 years; 17 women) and 18 controls (32 ± 8 years; 12 women) were analyzed. Fourteen patients (37 ± 12 years; 11 women) returned for timepoint 2, while two patients provided only timepoint 2 clinical outcome data. At timepoint 1, there were no differences between patients and controls in T1, T2, and ADC, while FA was lower in mTBI frontal white matter. T1 at timepoint 1 and the change in T1 exhibited more (n = 18) moderate to strong correlations (|r|= 0.6-0.85) with clinical outcome at timepoint 2 than T2 (n = 3), FA (n = 7), and ADC (n = 2). High T1 at timepoint 1, and serially increasing T1, accounted for five of the six MR measures with the highest utility for identification of non-recovered patients at timepoint 2 (AUC > 0.80). CONCLUSION: T1 derived from MRF was found to have higher utility than T2, FA, and ADC for predicting 3-month outcome after mTBI. KEY POINTS: • In a region-of-interest approach, FA, ADC, and T1 and T2 all showed limited utility in differentiating patients from controls at an average of 24 and 90 days post-mild traumatic brain injury. • T1 at 24 days, and the serial change in T1, revealed more and stronger predictive correlations with clinical outcome at 90 days than did T2, ADC, or FA. • T1 showed better prospective identification of non-recovered patients at 90 days than ADC, T2, and FA.

Cognitive Dependence in Physically Independent Patients at Discharge From Acute Traumatic Brain Injury Rehabilitation.

OBJECTIVE: To determine the incidence of cognitive dependence in adults who are physically independent at discharge from acute traumatic brain injury (TBI) rehabilitation. DESIGN: Analysis of historical clinical and demographic data obtained from inpatient stay. SETTING: Inpatient rehabilitation unit in a large, metropolitan university hospital. PARTICIPANTS: Adult inpatients with moderate to severe TBI (N=226) who were physically independent at discharge from acute rehabilitation. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: FIM Motor and Cognitive subscales, discharge destination, and care plan. RESULTS: Approximately 69% (n=155) of the physically independent inpatients were cognitively dependent at discharge from acute rehabilitation, with the highest proportions of dependence found in the domains of problem solving and memory. Most (82.6%; n=128) of these physically independent, yet cognitively dependent, patients were discharged home. Of those discharged home, 82% (n=105) were discharged to the care of family members, and 11% (n=15) were discharged home alone. Patients from racial and ethnic minority backgrounds were significantly more likely than White patients to be discharged while cognitively dependent. CONCLUSIONS: The majority of physically independent patients with TBI were cognitively dependent at the time of discharge from acute inpatient rehabilitation. Further research is needed to understand the effect of cognitive dependence on caregiver stress and strain and the disproportionate burden on racial and ethnic minority patients and families. Given the potential functional and safety limitations imposed by cognitive deficits, health care policy and practice should facilitate delivery of cognitive rehabilitation services in acute TBI rehabilitation.

Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design.

STUDY DESIGN: International multicentre cross-sectional study. OBJECTIVES: To describe the organisation and systems of paediatric spinal cord injury (SCI) rehabilitation services in seven countries and compare them with available recommendations and key features of paediatric SCI. SETTING: Ten SCI rehabilitation units in seven countries admitting children and adolescents with SCI < 18 years of age. METHODS: An online survey reporting data from 2017. Descriptive and qualitative analysis were used to describe the data. RESULTS: The units reported large variations in catchment area, paediatric population and referrals, but similar challenges in discharge policy. Nine of the units were publicly funded. Three units had a paediatric SCI unit. The most frequent causes of traumatic injury were motor vehicle accidents, falls, and sports accidents. Unlike the other units, the Chinese units reported acrobatic dancing as a major cause. Mean length of stay in primary rehabilitation ranged between 18 and 203 days. Seven units offered life-long follow-up. There was a notable variation in staffing between the units; some of the teams were not optimal regarding the interdisciplinary and multiprofessional nature of the field. Eight units followed acknowledged standards and recommendations for specialised paediatric SCI rehabilitation and focused on family-centred care and rehabilitation as a dynamic process adapting to the child and the family. CONCLUSIONS: As anticipated, we found differences in the organisation and administration of rehabilitation services for paediatric SCI in the ten rehabilitation units in seven countries. This might indicate a need for internationally approved, evidence-based guidelines for specialised paediatric SCI rehabilitation.

Primary Language and Participation Outcomes in Hispanics With Traumatic Brain Injury: A Traumatic Brain Injury Model Systems Study.

OBJECTIVE: To examine the relationship between primary language and participation outcomes in English- and Spanish-speaking persons with complicated mild to severe traumatic brain injury (TBI) at 1 year post-injury. SETTING: Community following discharge from inpatient rehabilitation. PARTICIPANTS: A total of 998 Hispanic participants with outcomes available at year 1 follow-up; 492 (49%) indicated English as their primary language and 506 (51%) indicated Spanish as their primary language. DESIGN: Prospective, multicenter, cross-sectional, observational cohort study. MAIN MEASURES: Community participation at 1 year post-injury was assessed by 3 domains of the Participation Assessment with Recombined Tools-Objective (PART-O): Out and About, Productivity, and Social Relations. RESULTS: Unadjusted group comparisons showed better participation outcomes for English versus Spanish speakers for all PART-O domains and for the Balanced Total score. After controlling for relevant covariates, English-speaking participants had significantly better PART-O Balanced Total scores and better scores on the Social Relations domain, although effect sizes were small. CONCLUSIONS: Hispanic persons with TBI whose primary language is Spanish may require greater assistance integrating socially back into their communities after TBI. However, potential cultural differences in value placed on various social activities must be considered. Potential cultural bias inherent in existing measures of participation should be investigated in future studies.

Refining understanding of life satisfaction in elderly persons with traumatic brain injury using age-defined cohorts: a TBI model systems study.

OBJECTIVE: Examine effects of age cohort on post-injury life satisfaction in elderly persons with TBIDesign: Retrospective cohortSetting: TBI Model Systems centers. PARTICIPANTS: 5,109 elderly participants with TBI in the TBI Model Systems National DatabaseInterventions: Not applicableMain Outcome Measures: Demographics, injury characteristics and cause, outcomes, age at time of analysis, time to follow commands, maximum follow-up period, and scores on the Satisfaction With Life Scale (SWLS) and Participation Assessment with Recombined Tools-Objective (PART-O) scores at 1, 2, 5, or 10 years post-injury. RESULTS: Life satisfaction post-TBI across groups increased with age. The young-old sub-group demonstrated the poorest life satisfaction outcomes, while the oldest sub-group experienced greatest life satisfaction. In contrast, participation decreased with age. CONCLUSIONS: Findings show diversity in satisfaction with life following moderate to severe TBI for three elderly age-cohorts. Differences may be due to variations in generation-based lived experience, in perceived meaningfulness of participation, could echo prior evidence of greater resilience in the oldest group, or could reflect bias within the study sample. Further research into between- and within- differences for elderly TBI age cohorts is needed to more precisely meet their needs for physical and functional rehabilitation as well as psychological supports.

Development and Calibration of the TBI-QOL Ability to Participate in Social Roles and Activities and TBI-QOL Satisfaction With Social Roles and Activities Item Banks and Short Forms.

OBJECTIVE: To develop traumatic brain injury (TBI)-optimized versions of the Quality of Life in Neurological Disorders (Neuro-QoL) Ability to Participate in Social Roles and Activities and Satisfaction with Social Roles and Activities item banks, evaluate the psychometric properties of the item banks developed for adults with TBI, develop short form and computer adaptive test (CAT) versions, and report information to facilitate research and clinical applications. DESIGN: We used a mixed methods design to develop and evaluate Ability to Participate in Social Roles and Activities and Satisfaction with Social Roles and Activities items. Focus groups defined the constructs, cognitive interviews guided item revisions, and confirmatory factor analysis and item response theory methods helped calibrate item banks and evaluate differential item functioning related to demographic and injury characteristics. SETTING: Five TBI Model Systems centers in the United States. PARTICIPANTS: Community-dwelling adults with TBI (N=556). INTERVENTIONS: None. OUTCOME MEASURES: Traumatic Brain Injury-Quality of Life (TBI-QOL) Ability to Participate in Social Roles and Activities and TBI-QOL Satisfaction with Social Roles and Activities item banks. RESULTS: Forty-five Ability to Participate in Social Roles and Activities and 41 Satisfaction with Social Roles and Activities items demonstrated good psychometric properties. Although some of the items are new, most were drawn from analogous banks in the Neuro-QoL measurement system. Consequently, the 2 TBI-QOL item banks were linked to the Neuro-QoL metric, and scores are comparable with the general population. All CAT and short forms correlated highly (>0.90) with the full item banks and demonstrate comparable construct coverage and measurement error. CONCLUSION: The TBI-QOL Ability to Participate in Social Roles and Activities and TBI-QOL Satisfaction with Social Roles and Activities item banks are TBI-optimized versions of the Neuro-QoL Ability to Participate in Social Roles and Activities and Satisfaction with Social Roles and Activities item banks and demonstrate excellent measurement properties in individuals with TBI. These measures, particularly in CAT or short form format, are suitable for efficient and precise measurement of social outcomes in clinical and research applications.

Measuring Pain in TBI: Development of the TBI-QOL Pain Interference Item Bank and Short Form.

OBJECTIVE: To develop a pain interference item bank, computer adaptive test (CAT), and short form for use by individuals with traumatic brain injury (TBI). DESIGN: Cross-sectional survey study. SETTING: Five TBI Model Systems rehabilitation hospitals. PARTICIPANTS: Individuals with TBI (N=590). INTERVENTIONS: Not applicable. OUTCOME MEASURES: Traumatic Brain Injury-Quality of Life (TBI-QOL) Pain Interference item bank. RESULTS: Confirmatory factor analysis provided evidence of a single underlying trait (χ2 [740]=3254.030; P<.001; Comparative Fix Index=0.988; Tucker-Lewis Index=0.980; Root Mean Square Error of Approximation=0.076) and a graded response model (GRM) supported item fit of 40 Pain Interference items. Items did not exhibit differential item functioning or local item dependence. GRM calibration data were used to inform the selection of a 10-item static short form and to program a TBI-QOL Pain Interference CAT. Comparative analyses indicated excellent comparability and reliability across test administration formats. CONCLUSION: The 40-item TBI-QOL Pain Interference item bank demonstrated strong psychometric properties. End users can administer this measure as either a 10-item short form or CAT.

Factors associated with the remission of insomnia after traumatic brain injury: a traumatic brain injury model systems study.

Objective: To examine the factors associated with the remission of insomnia by examining a sample of individuals who had insomnia within the first two years after traumatic brain injury (TBI) and assessing their status at a secondary time point.Design and Methods: Secondary data analysis from a multicenter longitudinal cohort study. A sample of 40 individuals meeting inclusion criteria completed a number of self-report scales measuring sleep/wake characteristics (Pittsburgh Sleep Quality Index, Epworth Sleepiness Scale, Insomnia Severity Index, Sleep Hygiene Index), fatigue and depression (Multidimensional Assessment of Fatigue, Patient Health Questionnaire-9), and community participation (Participation Assessment with Recombined Tools-Objective). One cohort was followed at 1 and 2 years post-injury (n = 19) while a second cohort was followed at 2 and 5 years post-injury (n = 21).Results: Remission of insomnia was noted in 60% of the sample. Those with persistent insomnia had significantly higher levels of fatigue and depression at their final follow-up and poorer sleep hygiene across both follow-up time-points. A trend toward reduced community participation among those with persistent insomnia was also found.Conclusion: Individuals with persistent post-TBI insomnia had poorer psychosocial outcomes. The chronicity of post-TBI insomnia may be associated with sleep-related behaviors that serve as perpetuating factors.

Measuring Fatigue in TBI: Development of the TBI-QOL Fatigue Item Bank and Short Form.

OBJECTIVE: To develop a traumatic brain injury (TBI)-specific, item response theory (IRT)-calibrated Fatigue item bank, short form, and computer adaptive test (CAT) as part of the Traumatic Brain Injury-Quality of Life (TBI-QOL) measurement system. SETTING: Five TBI Model Systems rehabilitation centers in the US PARTICIPANTS:: Adults with complicated mild, moderate, or severe TBI confirmed by medical record review. DESIGN: Cross-sectional field testing via phone or in-person interview. MAIN MEASURES: TBI-QOL Fatigue item bank, short form, and CAT. RESULTS: A total of 590 adults with TBI completed 95 preliminary fatigue items, including 86 items from the Patient-Reported Outcomes Measurement Information System (PROMIS) and 9 items from the Quality of Life in Neurological Disorders (Neuro-QOL) system. Through 4 iterations of factor analysis, 22 items were deleted for reasons such as local item dependence, misfit, and low item-total correlations. Graded response model IRT analyses were conducted on the 73-item set, and Stocking-Lord equating was used to transform the item parameters to the PROMIS (general population) metric. A short form and CAT, which demonstrate similar reliability to the full item bank, were developed. Test-retest reliability of the CAT was established in an independent sample (Pearson's r and intraclass correlation coefficient = 0.82 [95% confidence interval: 0.72-0.88]). CONCLUSIONS: The TBI-QOL Fatigue item bank, short form, and CAT provide rehabilitation researchers and clinicians with TBI-optimized tools for assessment of the patient-reported experience and impact of fatigue on individuals with TBI.

Linking the GAD-7 and PHQ-9 to the TBI-QOL Anxiety and Depression Item Banks.

OBJECTIVE: To link scores on commonly used measures of anxiety (7-item Generalized Anxiety Disorder Scale; GAD-7) and depression (9-item Patient Health Questionnaire; PHQ-9) to the Traumatic Brain Injury Quality of Life (TBI-QOL) measurement system. SETTING: 5 Traumatic Brain Injury Model Systems. PARTICIPANTS: A total of 385 individuals with traumatic brain injury (TBI) (31% complicated mild; 14% moderate; and 54% severe). DESIGN: Observational cohort. MAIN MEASURES: GAD-7, PHQ-9, TBI-QOL Anxiety v1.0 and TBI-QOL Depression v1.0. RESULTS: Item response theory-based linking methods were used to create crosswalk tables that convert scores on the GAD-7 to the TBI-QOL Anxiety metric and scores on the PHQ-9 to the TBI-QOL Depression metric. Comparisons between actual and crosswalked scores suggest that the linkages were successful and are appropriate for group-level analysis. Linking functions closely mirror crosswalks between the GAD-7/PHQ-9 and the Patient-Reported Outcomes Measurement Information System (PROMIS), suggesting that general population linkages are similar to those from a TBI sample. CONCLUSION: Researchers and clinicians can use the crosswalk tables to transform scores on the GAD-7 and the PHQ-9 to the TBI-QOL metric for group-level analyses.