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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.

Objectives: Few studies have explored the lived experiences of chronic cognitive and mood symptoms following stroke using a racially/ethnically diverse sample. Therefore, we aimed to explore the perceptions of chronic post-stroke cognition and mood symptoms and goals among a racially/ethnically diverse sample of community-dwelling adults aging with stroke. Method: This qualitative study using mixed-methods analysis included semi-structured interviews regarding perceived post-stroke cognitive and mood symptoms among community-dwelling stroke survivors at least one-year post stroke. Transcripts were subjected to thematic content analysis, and differences in theme usage patterns by age, gender, race/ethnicity, and post-acute rehabilitation setting were assessed using an inferential clustering technique. Results: The majority of participants (93%) reported cognition-related themes, including language and communication, memory, thinking abilities, comprehension, visual-spatial processing, and cognitive assessments and training. Nearly half of participants mentioned mood-related themes, including depression, aggression and anger, mood fluctuations, anxiety, and psychological services and medication. Nearly half reported an unmet need for cognition or mood-related treatment. Inferential clustering analysis revealed that older participants reported a different pattern of cognitive and mood symptoms than those aged younger than 65 ( p  = 0.02). Older adults were more likely to describe post-stroke language/communication changes, while younger adults described post-stroke mood changes. Conclusion: Stroke survivors experienced cognitive and mood-related symptoms beyond one-year post stroke, which has implications for long-term assessment and management. Incorporation of continued symptom monitoring into existing community-based services is needed to address chronic cognitive and mood symptoms affecting the quality of life of persons with stroke.

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., (Copyright © 2018 American Congress of Rehabilitation Medicine. All rights reserved.)

Purpose: Establishing the psychometric reliability and validity of new measures is an ongoing process. More work is needed in to confirm the clinical utility of the TBI-CareQOL measurement development system in both an independent cohort of caregivers of traumatic brain injury (TBI), as well as in additional caregiver groups. Methods: An independent cohort of caregivers of people with TBI (n = 139), as well as three new diverse caregiver cohorts (n = 19 caregivers of persons with spinal cord injury, n = 21 caregivers for persons with Huntington disease, and n = 30 caregivers for persons with cancer), completed 11 TBI-CareQOL measures (caregiver strain; caregiver-specific anxiety; anxiety; depression; anger; self-efficacy; positive affect and well-being; perceived stress; satisfaction with social roles and activities; fatigue; sleep-related impairment), as well as two additional measures to examine convergent and discriminant validity (PROMIS Global Health; the Caregiver Appraisal Scale). Results: Findings support the internal consistency reliability (all alphas > 0.70 with the vast majority being > 0.80 across the different cohorts) of the TBI-CareQOL measures. All measures were free of ceiling effects, and the vast majority were also free of floor effects. Convergent validity was supported by moderate to high correlations between the TBI-CareQOL and related measures, while discriminant validity was supported by low correlations between the TBI-CareQOL measures and unrelated constructs. Conclusion: Findings indicate that the TBI-CareQOL measures have clinical utility in caregivers of people with TBI, as well as in other caregiver groups. As such, these measures should be considered as important outcome measures for clinical trials aiming to improve caregiver outcomes. Plain English summary: As the complexities of disease management and care needs grow, so does the need for informal caregivers. Providing care for a family member or friend with a significant health condition can have a deleterious impact on caregiver health-related quality of life (HRQOL), as well as the HRQOL of the care recipient. Reliable and valid measures of HRQOL can help us to better understand the treatment needs of these caregiver populations. [ABSTRACT FROM AUTHOR]

Informal family care partners of persons with traumatic brain injury (TBI) often experience intense stress resulting from their caregiver role. As such, there is a need for low burden, and easy to engage in interventions to improve health-related quality of life (HRQOL) for these care partners. This study is designed to evaluate the effectiveness of a personalized just-in-time adaptive intervention (JITAI) aimed at improving the HRQOL of care partners. Participants are randomized either to a control group, where they wear the Fitbit® and provide daily reports of HRQOL over a six-month (180 day) period (without the personalized feedback), or the JITAI group, where they wear the Fitbit®, provide daily reports of HRQOL and receive personalized self-management pushes for 6 months. 240 participants will be enrolled (n = 120 control group; n = 120 JITAI group). Outcomes are collected at baseline, 1-, 2-, 3-, 4-, 5- & 6-months, as well as 3- and 6-months post intervention. We hypothesize that the care partners who receive the intervention (JITAI group) will show improvements in caregiver strain (primary outcome) and mental health (depression and anxiety) after the 6-month (180 day) home monitoring period. Participant recruitment for this study started in November 2020. Data collection efforts should be completed by spring 2025; results are expected by winter 2025. At the conclusion of this randomized control trial, we will be able to identify care partners at greatest risk for negative physical and mental health outcomes, and will have demonstrated the efficacy of this JITAI intervention to improve HRQOL for these care partners. Trial registration: ClinicalTrial.gov NCT04570930; https://clinicaltrials.gov/ct2/show/NCT04570930. [ABSTRACT FROM AUTHOR]

To explore the impact of traumatic brain injury (TBI) on the quality of life (QoL) and self-concept of Spanish-speaking U.S. Hispanic immigrants with TBI. A prospective, qualitative study conducted in a county level I trauma center and community. Semi-structured interviews on QoL and self-concept following TBI were conducted with 24 Spanish-speaking U.S. Hispanic immigrants with TBI living in the community at least 6 months following injury. Perceived facilitators of QoL included faith, hopefulness in recovery, empathy for others, and support from others. Perceived barriers to QoL mentioned were symptoms/consequences of injury, employment/financial changes, loss of independence, fear/uncertainty, stigma/shame, lack of medical care, and decreased social integration. Participants described their self-concept after TBI as either a maintained self or loss of self. Those who viewed themselves differently reported physical and emotional changes, gender role conflict, loss of self-worth, and total loss due to the TBI. Spanish-speaking U.S. Hispanic immigrants held a strong faith and positive outlook after TBI in spite of the significant barriers to recovery. A need exists for programs to support creatively the recovery of Spanish-speaking U.S. Hispanic immigrants with limited access to care and resources. Spanish-speaking U.S. Hispanic immigrants may experience significant barriers to care following traumatic brain injury (TBI), such as access to rehabilitation services and follow-up care. Rehabilitation professionals should consider the importance of faith and encourage positive thinking and social support when working with Spanish-speaking U.S. Hispanic immigrants on how to cope with TBI-related challenges. Access to Spanish-speaking rehabilitation professionals, translators and Spanish language educational materials could help reduce language-related barriers to recovery among Spanish-speaking U.S. immigrants with TBI. Rehabilitation facilities should develop partnerships with community-based organizations serving the uninsured or underinsured to address the access to rehabilitation and medical needs of Spanish-speaking U.S. immigrants with TBI. [ABSTRACT FROM AUTHOR]

Abstract 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. [ABSTRACT FROM AUTHOR]

The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents,n = 21 partners/spouses; 77% female; mean age = 57.96 years, range = 34–78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent sub-themes indicated that caregivers are (1) overburdened with responsibilities, (2) lack personal time and time for self-care, (3) feel that their life is interrupted or lost, (4) grieve the loss of the person with TBI, and (5) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of sub-themes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ. [ABSTRACT FROM PUBLISHER]

Objectives: To (1) identify demographic characteristics of individuals with traumatic brain injury (TBI) who attend religious services, (2) understand the relationship between attending religious services and psychosocial outcomes and (3) examine the independent contribution of religious service attendance to psychosocial outcomes while controlling for demographic characteristics, functional status and geographic location at 1, 5 and 10-years post injury. Design: Retrospective, cross-sectional cohort study using secondary data analysis of the TBI Model Systems (TBIMS) National Database (NDB). Participants: TBIMS NDB participants who completed 1, 5 or 10-year follow-up interview with data on religious attendance. A total of 5573 interviews were analysed. Outcome measures: Satisfaction with Life scale (SWLS), Generalized Anxiety Disorder (GAD-7), Patient Health Questionnaire (PHQ-9) and Participation Assessment with Recombined Tools-Objective Social sub-scale. Results: Approximately half of the sample was attending religious services at each time point. Attendance was a significant protective factor for each outcome across all three-time periods. After controlling for demographic characteristics, functional status and geographic makeup, religious attendance contributed a small but significant amount of unique variance in all models except for GAD-7 at years 1 and 10. Discussion: This study highlights the benefits of religious attendance on psychosocial outcomes post-TBI. Implications for rehabilitation are discussed. [ABSTRACT FROM PUBLISHER]

Objective: To identify preinjury coping profiles among adults with uncomplicated mild traumatic brain injury (mTBI) and complicated mTBI and to determine whether preinjury coping profiles contribute to the prediction of emotional functioning and quality of life (QOL) 3 months post-mTBI. Participants: One hundred eighty-seven persons with medically documented mTBI (uncomplicated mTBI, n = 89; complicated mTBI, n = 98) were recruited from the emergency center of a level I trauma center and followed in community 3 months post-mTBI. Measures: The Ways of Coping Questionnaire was administered within 2 weeks of injury. Cluster analysis was used to group participants on basis of their preinjury use of problem-focused and avoidant coping strategies. The Brief Symptom Inventory and the 36-item Short-Form Health Survey were administered 3 months postinjury. Results: Cluster analysis distinguished 3 distinct preinjury coping profiles that were differentially associated with outcomes. Participants who used avoidant coping showed the worse emotional functioning and QOL outcomes, although this cluster also reported high usage of problem-focused strategies. Preinjury coping profiles explained a significant proportion of the variance in depression, anxiety, and mental health QOL at 3 months postinjury beyond that accounted for by demographic characteristics and mTBI severity. Conclusions: Cluster analysis holds practical value in illustrating the pattern of coping strategies used by person with uncomplicated and complicated mTBI. It appears worthwhile to address coping in future trials of interventions that are aimed at improving emotional functioning after mTBI. [ABSTRACT FROM AUTHOR]