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.

Stakeholder Engagement to Identify Implementation Strategies to Overcome Barriers to Delivering Chronic Pain Treatments: A NIDILRR and VA TBI Model Systems Collaborative Project.

OBJECTIVE: The purpose of this article is to illustrate the process of stakeholder-engaged intervention mapping approach to identify implementation strategies to overcome data-driven prioritized barriers to receiving chronic pain services for persons with traumatic brain injury (TBI). SETTING: Community. PARTICIPANTS: Healthcare providers (n = 63) with 2 or more years' experience treating persons with TBI, interviewed between October 2020 and November 2021 provided data for identification of barriers. TBI, chronic pain, and qualitative research subject matter experts (SMEs) participated in the mapping approach. DESIGN: Participatory-based research design, using descriptive and intervention mapping approaches. RESULTS: Four barriers to accessing chronic pain treatment by persons with TBI which emerged from provider interviews were prioritized for intervention mapping: cognitive deficits of patients (67%); patient comorbidities (63%); mental health and/or substance abuse issues (59%); and patient participation (62%). SMEs used prioritized barriers to develop 4 primary objectives and implementation strategies designed to: (1) engage consumers to validate and identify strategies; (2) tailor pain treatment and delivery to overcome barriers; (3) develop and disseminate guidelines and best practices when delivering care to persons with TBI to support spread; and (4) increase awareness, skills, and readiness of workforce to deliver pain treatment to persons with TBI. SMEs used an evidence-based approach to develop a mapping matrix of the prioritized barriers, implementation objectives, and aligned implementation strategies to impact change. CONCLUSION: Implementation science is needed to facilitate knowledge translation into practice for this complex population to overcome barriers to care. Implementation strategies to address barriers to accessing chronic pain care for individuals with TBI were chosen through a participatory approach to engaging SMEs to support these rehabilitation implementation efforts. Future work includes gathering input from individuals with TBI and chronic pain and to move the intervention (implementation) mapping matrix forward to inform future implementation research, policy, and practice.

Characterization and Treatment of Chronic Pain After Traumatic Brain Injury-Comparison of Characteristics Between Individuals With Current Pain, Past Pain, and No Pain: A NIDILRR and VA TBI Model Systems Collaborative Project.

OBJECTIVE: To estimate the prevalence of chronic pain after traumatic brain injury (TBI) and identify characteristics that differ from those without chronic pain. SETTING: Community. PARTICIPANTS: A total of 3804 TBI Model Systems (TBIMS) participants who completed the Pain Survey at TBIMS follow-up. DESIGN: A multisite, cross-sectional observational cohort study. MAIN OUTCOME MEASURES: Functional outcomes, pain experience, and treatment. RESULTS: 46% reported current chronic pain, 14% reported past (post-injury) chronic pain, and 40% reported no chronic pain. Bivariate differences in sociodemographic and injury characteristics between the 3 pain groups were generally small in effect size, reflecting little clinical difference. However, medium effect sizes were seen for all functional outcomes, such that individuals with current chronic pain had worse functional outcomes compared with individuals in the past pain or no pain groups. Treatment utilization rates were higher for individuals with current chronic pain compared with past pain, with medical treatments being most frequently utilized. Individuals with past pain perceived more improvement with treatment than did those with current chronic pain as represented by a large effect size. CONCLUSIONS: Chronic pain affects approximately 60% of those living with TBI. The implications of chronic pain for functional outcomes support inclusion of pain metrics in prognostic models and observational studies in this population. Future research is needed to proactively identify those at risk for the development of chronic pain and determine the efficacy and access to pain treatment.

Provider Perspectives of Facilitators and Barriers to Reaching and Utilizing Chronic Pain Healthcare for Persons With Traumatic Brain Injury: A Qualitative NIDILRR and VA TBI Model Systems Collaborative Project.

OBJECTIVE: To identify facilitators and barriers to reaching and utilizing chronic pain treatments for persons with traumatic brain injury (TBI) organized around an Access to Care framework, which includes dimensions of access to healthcare as a function of supply (ie, provider/system) and demand (ie, patient) factors for a specified patient population. SETTING: Community. PARTICIPANTS: Clinicians (n = 63) with experience treating persons with TBI were interviewed between October 2020 and November 2021. DESIGN: Descriptive, qualitative study. MAIN MEASURES: Semistructured open-ended interview of chronic pain management for persons with TBI. Informed by the Access to Care framework, responses were coded by and categorized within the core domains (reaching care, utilizing care) and relevant subdimensions from the supply (affordability of providing care, quality, coordination/continuity, adequacy) and demand (ability to pay, adherence, empowerment, caregiver support) perspective. RESULTS: Themes from provider interviews focused on healthcare reaching and healthcare utilization resulted in 19 facilitators and 9 barriers reaching saturation. The most themes fell under the utilization core domain, with themes identified that impact the technical and interpersonal quality of care and care coordination/continuity. Accessibility and availability of specialty care and use of interdisciplinary team that permitted matching patients to treatments were leading thematic facilitators. The leading thematic barrier identified primarily by medical providers was cognitive disability, which is likely directly linked with other leading barriers including high rates of noncompliance and poor follow-up in health care. Medical and behavioral health complexity was also a leading barrier to care and potentially interrelated to other themes identified. CONCLUSION: This is the first evidence-based study to inform policy and planning for this complex population to improve access to high-quality chronic pain treatment. Further research is needed to gain a better understanding of the perspectives of individuals with TBI/caregivers to inform interventions to improve access to chronic pain treatment for persons with TBI.

Provider Perceived Facilitators and Barriers to Identifying, Perceiving, and Seeking Healthcare for Chronic Pain After TBI: A Qualitative NIDILRR and VA TBI Model Systems Collaborative Project.

OBJECTIVE: Identify determinants to chronic pain healthcare for persons with traumatic brain injury (TBI) informed by an Access to Care Framework. Findings related to the Access Framework's core domains of identifying a need, perceptions of the need, and seeking healthcare are reported. SETTING: Community. PARTICIPANTS: Healthcare providers (n = 63) with 2 or more years of experience treating persons with TBI interviewed between October 2020 and November 2021. DESIGN: Descriptive, qualitative study. MAIN MEASURES: Semi-structured interviews with open-ended questions of chronic pain management for persons with TBI. Informed by the Access Framework, responses were coded by and categorized within the domains of identifying healthcare needs, perceptions of needs, and factors related to healthcare seeking from the supply and demand perspective. RESULTS: For the overall sample, 14 facilitators and 6 barriers were endorsed by more than 20% of the provider cohort. Top facilitators included on-site availability of needed resources and treatments (94%), adequate time and provider capability to ensure patient comprehension of diagnosis and treatment plans (83%), and establishing patient motivation and buy-in with the treatment plan (75%). Barriers most endorsed included policies impacting access (46%), wait times for services (41%), and patient uncertainty regarding telehealth commonly due to cognitive and physical challenges (37%). Unique determinants are reported across civilian versus Department of Veterans Affairs (VA) healthcare systems and different provider types. CONCLUSION: This is the first evidence-based study to inform policy and planning to improve access to high-quality chronic pain treatments for persons with TBI. Results will inform future interventions at the systems, patient, and policy levels of healthcare that can be tailored to healthcare settings (VA, Civilian) and types of providers (rehabilitation therapists, psychologists, and medical). Evidence-informed interventions may help minimize healthcare disparities experienced by persons with TBI and facilitate access to high-quality, evidence-informed chronic pain care.

Associations of Chronic Pain With Psychosocial Outcomes After Traumatic Brain Injury: A NIDILRR and VA TBI Model Systems Collaborative Project.

OBJECTIVE: To examine the differences in participation, life satisfaction, and psychosocial outcomes among individuals with traumatic brain injury (TBI) endorsing current, past, or no chronic pain. SETTING: Community. PARTICIPANTS: Three thousand eight hundred four TBI Model Systems participants 1 to 30 years of age postinjury classified into 1 of 3 groups based on their pain experience: current pain, past pain, no pain completed a Pain Survey at their usual follow-up appointment which on average was approximately 8 years postinjury. DESIGN: Multisite, cross-sectional observational cohort study. MAIN OUTCOME MEASURES: Sociodemographic and injury characteristics and psychosocial outcomes (ie, satisfaction with life, depression, anxiety, posttraumatic stress disorder [PTSD], sleep quality, community participation). RESULTS: Persons with current chronic pain demonstrated higher scores on measures of PTSD, anxiety, and depression, and the lower scores on measures of sleep quality, community participation and satisfaction with life. Those with resolved past pain had mean scores for these outcomes that were all between the current and no chronic pain groups, but always closest to the no pain group. After adjusting for sociodemographic and function in multivariate analysis, having current chronic pain was associated with more negative psychosocial outcomes. The largest effect sizes (ES; in absolute value) were observed for the PTSD, depression, anxiety, and sleep quality measures (ES = 0.52-0.81) when comparing current pain to past or no pain, smaller ES were observed for life satisfaction (ES = 0.22-0.37) and out and about participation (ES = 0.16-0.18). When comparing past and no pain groups, adjusted ES were generally small for life satisfaction, PTSD, depression, anxiety, and sleep quality (ES = 0.10-0.23) and minimal for participation outcomes (ES = 0.02-0.06). CONCLUSIONS: Chronic pain is prevalent among individuals with TBI and is associated with poorer psychosocial outcomes, especially for PTSD, depression, anxiety, and sleep disturbance. The results from this study highlight the presence of modifiable comorbidities among those with chronic pain and TBI. Persons who experience persistent pain following TBI may be at greater risk for worse psychosocial outcomes.

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.

Influence of Acceptance and Commitment Therapy Core Processes on Anxiety and Stress in Persons With Spinal Cord Injury: A Cross-sectional Study.

OBJECTIVE: To explore the relationship between the core Acceptance and Commitment Therapy (ACT) processes (mindfulness, self as context, acceptance, defusion, values, and committed action) and anxiety and stress in a sample of individuals with spinal cord injury (SCI). DESIGN: Variance accounted for by ACT on anxiety and stress as outcome variables was examined using multiple linear regression. SETTING: Study measures were completed via online survey. PARTICIPANTS: 159 participants with a SCI completed self-report study measures relevant to the ACT core processes as well as measures of depression, anxiety, and perceived stress. MAIN OUTCOME MEASURES: Outcome measures included the Spinal Cord Injury-Quality of Life Anxiety subdomain and the Perceived Stress Scale. RESULTS: Higher reported engagement with acceptance (ß=0.238, P=.004), pursuit of values (ß=0.187, P<.008), and defusion (ß=0.351, P<.001) related to less anxious distress. Perceived stress was predicted by depression (ß = 0.230, P=.038) and the ACT core processes as a whole (P<.001). CONCLUSIONS: The results of our study indicate that considerable variance in anxiety and stress in individuals with SCI is accounted for by the core processes of ACT. Lower levels of anxiety and stress were predicted by the ACT components as a whole. Anxiety was uniquely predicted by pursuit of values, acceptance, and defusion, indicating these 3 components of ACT may be particularly beneficial in the treatment of anxiety in SCI. These results may provide targeted treatment opportunities via tailored ACT-based interventions.

Initial Evidence for Reliable and Valid Use of Scores on the 8-Item Econ-QOL Short Form to Measure Economic Quality of Life in Caregivers of Persons With Traumatic Brain Injury.

OBJECTIVE: To provide reliability and validity data to support the clinical utility of Economic Quality of Life Measure (Econ-QOL) scores in caregivers of civilians and service members/veterans with traumatic brain injury (TBI). DESIGN: Cross-sectional survey study. SETTING: Three academic medical centers and a Veterans Affairs treatment facility. PARTICIPANTS: 376 caregivers of civilians (n=213) and service members/veterans (n=163) with TBI (N=376). INTERVENTIONS: N/A. MAIN OUTCOME MEASURES: Econ-QOL and several patient-reported outcome measures (Traumatic Brain Injury Caregiver Quality of Life Caregiver-Specific Anxiety and Caregiver Strain, Patient-Reported Outcomes Measurement Information System sleep-related impairment, Neurological Quality of Life Measurement System positive affect and well-being) and measures of financial status (self-reported income). RESULTS: Internal consistency reliability of the Econ-QOL Short Form scores were excellent (all Cronbach's alphas ≥.92). There were no floor or ceiling effects for scores. There was evidence of convergent and discriminant validity, with the Econ-QOL scores having the strongest relationships with self-reported income (convergent validity evidence) and weak relationships with the other measures (discriminant validity evidence). Individuals with scores that were "below or possibly below" the poverty line (according to 2016 federal government poverty level thresholds) reported worse economic quality of life relative to those individuals who were definitely above the poverty line, supporting known-groups validity. CONCLUSIONS: This article establishes the clinical utility of scores on the Econ-QOL Short Form in caregivers of persons with TBI and provides evidence that it is valid and appropriate to use such scores not only in a variety of different disability populations (eg, spinal cord injury, stroke) but also in caregivers.

Coping With Chronic Pain After Traumatic Brain Injury: Role of Race/Ethnicity and Effect on Participation Outcomes in a TBI Model Systems Sample.

OBJECTIVE: To investigate catastrophizing and self-efficacy for managing pain among Non-Hispanic Whites, Non-Hispanic Blacks, and Hispanics with chronic pain after traumatic brain injury (TBI), and whether coping interacts with race/ethnicity to predict participation outcomes. SETTING: Community after discharge from inpatient rehabilitation. PARTICIPANTS: 621 individuals with moderate to severe TBI and chronic pain, who completed follow-up as part of a national longitudinal study of TBI and also participated in a collaborative study on chronic pain. DESIGN: Multicenter, cross-sectional, survey study. MAIN MEASURES: Catastrophizing subscale from the Coping With Pain Scale; Pain Self-Efficacy Questionnaire; Participation Assessment With Recombined Tools-Objective. RESULTS: After controlling for relevant sociodemographic variables, a significant interaction was observed between race/ethnicity and insurance status, such that Blacks who had public health insurance reported greater catastrophizing in response to pain compared with Whites. Race/ethnicity and self-efficacy for managing pain were unrelated. Greater catastrophizing was associated with lower participation but did not interact with race/ethnicity. Blacks reported lower participation relative to Whites, independent of catastrophizing. CONCLUSIONS: Black individuals who have TBI and chronic pain, and who have public insurance, may be vulnerable to difficulties managing pain. They are more likely to cope by catastrophizing, and catastrophizing is related to worse participation outcomes. The results suggest that access to care may affect response to chronic pain after TBI.

Disparities in Chronic Pain Experience and Treatment History Among Persons With Traumatic Brain Injury: A Traumatic Brain Injury Model Systems Study.

OBJECTIVE: To determine disparities in pain severity, pain interference, and history of pain treatment for non-Hispanic Whites, non-Hispanic Blacks, and Hispanics with traumatic brain injury (TBI) and chronic pain. SETTING: Community following discharge from inpatient rehabilitation. PARTICIPANTS: A total of 621 individuals with medically documented moderate to severe TBI who had received acute trauma care and inpatient rehabilitation (440 non-Hispanic Whites, 111 non-Hispanic Blacks, and 70 Hispanics). DESIGN: A multicenter, cross-sectional, survey study. MAIN MEASURES: Brief Pain Inventory; receipt of opioid prescription; receipt of nonpharmacologic pain treatments; and receipt of comprehensive interdisciplinary pain rehabilitation. RESULTS: After controlling for relevant sociodemographic variables, non-Hispanic Blacks reported greater pain severity and greater pain interference relative to non-Hispanic Whites. Race/ethnicity interacted with age, such that the differences between Whites and Blacks were greater for older participants (for severity and interference) and for those with less than a high school education (for interference). There were no differences found between the racial/ethnic groups in the odds of having ever received pain treatment. CONCLUSIONS: Among individuals with TBI who report chronic pain, non-Hispanic Blacks may be more vulnerable to difficulties managing pain severity and to interference of pain in activities and mood. Systemic biases experienced by many Black individuals with regard to social determinants of health must be considered in a holistic approach to assessing and treating chronic pain in individuals with TBI.

Examining Cultural, Ethnic, and Religious Differences with the Brief Multidimensional Measure of Religiousness and Spirituality in the U.S. and India.

The Brief Multidimensional Measure of Religiousness/Spirituality (BMMRS) is regularly used to measure spirituality and religiosity in U.S. Christian populations, although it has not been used for making comparisons with non-Western groups. This study compared BMMRS results for 109 individuals (60 in the U.S. and 49 in India) with traumatic brain injury (TBI) from different cultures (U.S., India), ethnic groups (African American, Caucasian, South Asian), and religions (Christian, Hindu, Muslim). In general, the results indicated that U.S. African Americans and Christians reported being the most spiritual, South Asians and Hindus the least. Groups differed significantly in self-reported spiritual experiences, but less in frequency of religious activities. Results suggest using caution when applying Western-based measures of religion and spirituality in non-Western, non-Christian populations.

Establishing the Factor Structure of a Health-Related Quality of Life Measurement System for Caregivers of Persons Living With Traumatic Brain Injury.

OBJECTIVES: To understand the factor structure of health-related quality of life specific to caregivers of people living with traumatic brain injury (TBI). DESIGN: Prospective, cross-sectional data collection. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Caregivers (N=558) of people who have sustained a TBI (344 caregivers of civilians and 214 caregivers of service members or veterans; 85% women; 58% spouses; mean age, 46.12±14.07y) who have provided care for an average of 5.82±5.40 years. INTERVENTIONS: Not applicable. MAIN OUTCOMES MEASURES: The Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) measurement system including 10 Patient-Reported Outcomes Measurement Information System item banks (anger, anxiety, depression, social isolation, sleep disturbance, fatigue, ability to participate in social roles and activities, satisfaction with social roles and activities, emotional support, informational support) and 5 TBI-CareQOL banks (feelings of loss-self, feelings of loss-person with TBI, feeling trapped, caregiver-specific anxiety, caregiver strain). RESULTS: Confirmatory factor analysis model fit indices were compared for 14 empirically derived and 5 theoretically derived models. Confirmatory factor analysis results indicated that the best model fit was for a 6-factor model with dimensions that included mental health, social support, social participation, social isolation, physical health, and caregiver emotion. CONCLUSIONS: Results indicated that a 6-factor model provided the best model fit for health-related quality of life in caregivers of individuals with TBI. These results have utility for both research and clinical applications. Establishing the TBI-CareQOL's factor structure provides preliminary evidence of the measurement system's construct validity, helps inform the selection of measures for specific research or clinical interventions, and informs the development of composite scores.

Development and Psychometric Characteristics of the TBI-QOL Independence Item Bank and Short Form and the TBI-QOL Asking for Help Scale.

OBJECTIVE: To develop an item response theory (IRT)-calibrated, patient-reported outcome measure of subjective independence for individuals with traumatic brain injury (TBI). DESIGN: Large-scale item calibration field testing; confirmatory factor analysis (CFA) and graded response model IRT analyses. SETTING: Five TBI Model System centers across the United States. PARTICIPANTS: Adults with complicated mild, moderate, or severe TBI (N=556). OUTCOME MEASURES: Traumatic Brain Injury-Quality of Life (TBI-QOL) Independence item bank and the TBI-QOL Asking for Help scale. RESULTS: A total of 556 individuals completed 44 items in the Independence item pool. Initial factor analyses indicated that items related to the idea of "asking for help" were measuring a different construct from other items in the pool. These 9 items were set aside. Twenty-two other items were removed because of bimodal distributions and/or low item-total correlations. CFA supported unidimensionality of the remaining Independence items. Graded response model IRT analysis was used to estimate slopes and thresholds for the final 13 Independence items. An 8-item fixed-length short form was also developed. The 9 Asking for Help items were analyzed separately. One misfitting item was deleted, and the final 8 items became a fixed-length IRT-calibrated scale. Reliability was high for both measures. CONCLUSIONS: The IRT-calibrated TBI-QOL Independence item bank and short form and TBI-QOL Asking for Help scale may be used to measure important issues for individuals with TBI in research and clinical applications.

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.

Emotional Suppression and Hypervigilance in Military Caregivers: Relationship to Negative and Positive Affect.

OBJECTIVE: To investigate the relationship of 2 health-related quality-of-life (QOL) item banks (Emotional Suppression and Caregiver Vigilance), developed for caregivers of service members/veterans with traumatic brain injury (TBI), to caregivers' positive and negative affect. SETTING: Community. PARTICIPANTS: One hundred sixty-five caregivers of service members/veterans with TBI. DESIGN: Retrospective database analysis. MAIN MEASURES: TBI-CareQOL Emotional Suppression; TBI-CareQOL Caregiver Vigilance; measures of negative (Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Anger, TBI-CareQOL Caregiver-Specific Anxiety, National Institutes of Health Toolbox [NIHTB] Perceived Stress, GAD-7) and positive affect (Neuro-QOL Positive Affect and Well-being, NIHTB Self-efficacy, NIHTB General Life Satisfaction, Family Resilience Scale for Veterans, TBI-QOL Resilience). RESULTS: When considered separately, linear regression showed that higher levels of Emotional Suppression and greater Caregiver Vigilance were individually associated with more negative affect and less positive affect. When considered together, the pattern of findings was generally consistent for both Emotional Suppression and Caregiver Vigilance with regard to negative affect and for Emotional Suppression with regard to positive affect. However, when considered together, Caregiver Vigilance was no longer related to positive affect. CONCLUSIONS: Caregivers with high emotional suppression and/or vigilance are more likely to show emotional distress and less likely to have positive affect than caregivers with lower levels of emotional suppression and vigilance. A combination of education and individual counseling targeting coping with negative emotions and TBI-related problems may be beneficial.

Determining a transitional scoring link between PROMIS® pediatric and adult physical health measures.

PURPOSE: Having independent versions of the PROMIS® scales (for Pediatric and Adults) is problematic as scores cannot be evaluated longitudinally as individuals move from childhood into adulthood. The primary aim of this research project is to use item response theory (IRT) to develop a transitional scoring link (or "crosswalk") between the PROMIS adult and pediatric physical health measures. SETTING: Sample 1 was collected at 6 rehabilitation hospitals in the U.S., and participants in Sample 2 were recruited from public health insurance programs and an online research panel. METHODS: PROMIS pediatric and adult physical function, mobility, upper extremity, fatigue, and pain measures were administered to a sample of 874 individuals aged 14-20 years old with special health needs and a sample of 641 individuals aged 14-25 years with a disability. IRT-based scores were linked using a linear approximation to calibrated projection. RESULTS: Estimated latent variable correlations ranged between 0.84 and 0.95 for the PROMIS pediatric and adult scores. Root Expected Mean Square Difference values were below the 0.08 threshold in all cases except when comparing genders on the Mobility (0.097) and Pain (0.10) scales in the special health care needs sample. Sum score conversion tables for the pediatric and adult PROMIS measures are presented. CONCLUSIONS: The linking coefficients can be used to calculate scale scores on PROMIS adult measures from pediatric measure scores and vice versa. This may lead to more accurate measurement in cross-sectional studies spanning multiple age groups or longitudinal studies that require comparable measurement across distinct developmental stages.

Group Differences Among Caregivers of Civilians and Service Members or Veterans With Traumatic Brain Injury.

OBJECTIVE: To examine group differences among caregivers of service members or veterans (SMVs) and civilians with traumatic brain injury (TBI). DESIGN: An observational research study examining the group differences between caregivers of SMVs and civilians with TBI. The data presented was collected as part of a larger study that calibrated and validated the Traumatic Brain Injury-Care Quality of Life (TBI-CareQOL) item banks. SETTING: Participants in this multicenter study completed an online survey via a study-specific website. Surveys were completed at the study site, at home, or via phone interview. Civilian caregivers were recruited from 4 rehabilitation hospitals and caregivers of SMVs were recruited through community outreach and collaboration with the Hearts of Valor. PARTICIPANTS: Participants (N=473) consisted of 344 caregivers of civilians with TBI and 129 caregivers of SMVs with TBI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Zarit Burden Interview Scale, TBI-CareQOL, and Mayo Portland Adaptability Inventory, 4th revision (MPAI-4). RESULTS: Of the independent variables included in the logistic regression model that classified military-affiliated vs civilian caregivers, 5 were statistically significant: age, spousal status, time since injury, MPAI-4 Adjustment, and TBI-CareQOL Feeling Trapped. CONCLUSIONS: The results indicate that caregivers of SMVs were more likely to report worse emotional and social adjustment among the individuals with TBI and caregivers of SMVs were more likely to report greater levels of feeling trapped by their caregiving duties.

Understanding Health-related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Mental Health Measures.

OBJECTIVE: To provide important reliability and validity data to support the use of the Patient-Reported Outcomes Measurement Information System (PROMIS) mental health measures in caregivers of civilians or service members/veterans (SMVs) with traumatic brain injury (TBI). DESIGN: Patient-reported outcome surveys administered through an electronic data collection platform. SETTING: Three TBI model systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Caregivers (N=560) of individuals with a documented TBI (344 civilians and 216 military). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: PROMIS anxiety, depression, and anger item banks. RESULTS: Internal consistency for all the PROMIS Mental Health item banks was very good (all α>.86) and 3-week test-retest reliability was good to adequate (ranged from .65 to .85). Convergent validity and discriminant validity of the PROMIS measures were also supported. Caregivers of individuals who were low functioning had worse emotional health-related quality of life (HRQOL) (as measured by the 3 PROMIS measures) than caregivers of high-functioning individuals, supporting known groups validity. Finally, levels of distress, as measured by the PROMIS measures, were elevated for those caring for low-functioning individuals in both samples (rates ranged from 26.2% to 43.6% for caregivers of low-functioning individuals). CONCLUSIONS: Results support the reliability and validity of the PROMIS anxiety, depression, and anger item banks in caregivers of civilians and SMVs with TBI. Ultimately, these measures can be used to provide a standardized assessment of HRQOL because it relates to mental health in these caregivers.

The Development of a New Computer Adaptive Test to Evaluate Anxiety in Caregivers of Individuals With Traumatic Brain Injury: TBI-CareQOL Caregiver-Specific Anxiety.

OBJECTIVE: To design a new measure of caregiver-specific anxiety for use in caregivers of individuals with traumatic brain injury (TBI), the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Caregiver-Specific Anxiety item bank. DESIGN: Cross-sectional survey study. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Three hundred forty-four caregivers of civilians with TBI and 216 caregivers of service members/veterans with TBI (N=560). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: TBI-CareQOL Caregiver-Specific Anxiety item bank. RESULTS: The retention of 40 Caregiver-Specific Anxiety items was supported by exploratory and confirmatory factor analyses. Graded response model (GRM) and differential item functioning analyses supported the retention of 33 items in the final measure. Expert review and GRM calibration data was used to select a 6-item static short form, and GRM calibration data was used to program the TBI-CareQOL Caregiver-Specific Anxiety computer adaptive test (CAT). CONCLUSIONS: Established, rigorous measurement development standards were used to develop the new TBI-CareQOL Caregiver-Specific Anxiety CAT and corresponding 6-item short form. This measure is the first patient-reported outcome measure designed to assess caregiver-specific anxiety in caregivers of individuals with TBI. The measure exhibits strong psychometric properties.