Health literacy after traumatic brain injury: characterisation and control comparison.

Background Little is known about health literacy in traumatic brain injury (TBI) survivors. The aims of this study were to compare health literacy in individuals with TBI with that of a control group; to examine the association between health literacy in individuals with TBI and demographic, injury, and cognitive factors; and compare the relationship between health literacy and physical and mental health outcomes. Methods A cross-sectional observational study design was used. Adults (≥18years) were recruited from an outpatient research centre in Victoria, Australia. There were 209 participants with a complicated mild to severe TBI at least 1year previously (up to 30years 6months) and 206 control participants. Results Individuals with TBI did not have poorer health literacy than controls (IRR=1.31, P =0.102, CI95% [0.947, 1.812]). Further analysis could not be completed due to the highly skewed Health Literacy Assessment Using Talking Touchscreen Technology - Short Form (Health LiTT-SF) data. Conclusion Health literacy performance in individuals with TBI was not significantly different to controls. Premorbid education may provide a critical cognitive reserve upon which TBI survivors can draw to aid their health literacy. These findings are specific to the Health LiTT-SF measure only and require replication using more comprehensive health literacy measures in culturally diverse samples.

Recognition of Traumatic Brain Injury as a Chronic Condition: A Commentary.

Many clinicians believe that residual impairments due to traumatic brain injury (TBI) are static once initial recovery has plateaued. That is, the effects of the injury are not expected to change significantly over the remainder of a person's life. This assumption has been called into question by several independent longitudinal studies showing that the long-term course of TBI may be better characterized as dynamic rather than static. Health care services that recognize brain injury as a chronic condition would encourage education on self-management to improve or protect health, as well as proactive health care that anticipates common co-morbidities. Those who have had a TBI would be encouraged to engage in lifestyles that optimize wellness. Almost all developed countries commit additional public health resources to addressing chronic conditions. In the United States, specific benefits are available from health insurance plans, particularly Medicare and Medicaid, for persons experiencing chronic health conditions. Potentially the most important benefit would derive from health care practitioners becoming aware of the dynamic nature of chronic brain injury and thus being more attentive to how their patients could be better served to optimize improvement and minimize decline. Recognition of TBI as a chronic condition would not only focus more resources on problems associated with living with brain injury but would also enhance both the public's and professionals' awareness of how to optimize the health and well-being of persons living with the effects of TBI.

Model of Care for Chronic Brain Injury.

There is growing evidence that long-term outcomes after traumatic brain injury (TBI) are more dynamic than stable. People continue to change, both improving and declining, many years postinjury. Research, practice, and medical education have not yet fully embraced the implications of TBI as a chronic, dynamic condition. In 2020, the National Institute on Disability Independent Living and Rehabilitation Research funded the BeHEALTHY project to develop a model for long-term support of persons with chronic brain injury. Based on initial reviews of the available evidence and expert input from researchers, clinicians, and persons with lived experience, the BeHEALTHY model was proposed. Among existing chronic disease treatment models, Wagner's Chronic Care Model was selected as a starting point, with several critical refinements. The BeHEALTHY model endorses a person-centered approach, recognizing the individual with brain injury, and their social support system, as the primary source of goals in care planning. The model also acknowledges the critical importance of self-management and the need for health care programs to actively promote self-direction by the person using their social supports. The model also recognizes that outcomes are not determined solely by the person and the injury incurred but also by the environment in which a person lives and recovers. The importance of integrating health care with community resources is underscored by embracing environmental influences as a shared responsibility of the community and the health care system. This article recounts the impetus for developing the BeHEALTHY model and describes those it is intended to serve and its structural features and core components.

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.

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.

Mood Tracker: A Randomized Controlled Trial of a Self-Monitoring Intervention for Emotional Distress After Traumatic Brain Injury.

OBJECTIVE: Persons with traumatic brain injury (TBI) frequently experience emotional distress (ED) manifested in anxiety and depression. However, they may not access mental health services due to external (eg, access, transportation, and cost) or internal (eg, stigma and discomfort with traditional counseling) barriers. Based on substantial literature indicating that self-monitoring can ameliorate several health conditions, we conducted a randomized, parallel group, wait-list control (WLC) trial of a self-monitoring intervention to decrease ED after TBI. SETTING: Community in the southwestern United States. PARTICIPANTS: Persons with medically documented complicated mild, moderate, and severe TBI. DESIGN: About 127 participants were randomized in blocks of 6 to an active treatment (AT) group, wherein they completed multiple assessments of ED each week over a 6-week period via a smartphone app, or a WLC group in a parallel group, controlled trial. Participants received weekly support calls to promote self-monitoring of ED using ecological momentary assessment. MAIN MEASURES: ED (Patient Health Questionnaire-9 and Generalized Anxiety Disorder-7), Satisfaction with Life Scale, and Participation Assessment with Recombined Tools-Objective. RESULTS: Analysis of the primary study outcome at 6 weeks after initiation of treatment for the AT group did not demonstrate that self-monitoring was effective in decreasing ED as compared to the WLC group. Brief support calls made weekly to promote compliance with self-monitoring were effective in achieving the target number of self-assessments. About 80% of support calls lasted less than 5 minutes. Greater ED was associated with lower life satisfaction and lower participation indicating the importance of addressing ED in persons with TBI. CONCLUSION: Additional work is needed to develop nontraditional interventions to circumvent barriers that prevent persons with TBI from accessing care for ED. Brief support calls may be an effective, low-cost intervention to improve compliance with self-monitoring or self-management interventions.

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.

Association Between Participation and Satisfaction With Life Over Time in Older Adults With Traumatic Brain Injury: A TBI Model Systems Study.

OBJECTIVE: To examine the association between participation and satisfaction with life at 1, 2, 5, and 10 years after traumatic brain injury (TBI) in older adults. SETTING: Community. PARTICIPANTS: Participants ( N = 2362) who sustained complicated mild to severe TBI, requiring inpatient rehabilitation, at age 60 years or older and had follow-up data on participation and satisfaction with life for at least 1 follow-up time point across 1, 2, 5, and 10 years. Age at each time period was categorized as 60 to 64 years, 65 to 75 years, and 75 years or older. DESIGN: Secondary data analysis of a large multicenter database. MAIN MEASURES: Three domains (Productivity, Social Relations, Out and About) of the Participation Assessment With Recombined Tools-Objective (PART-O); Satisfaction With Life Scale (SWLS). RESULTS: SWLS increased over the 10 years after TBI and was significantly associated with greater frequency of participation across all domains. There was a significant interaction between age and PART-O Social Relations such that there was a weaker relationship between Social Relations and SWLS in the oldest group (75 years or older). There was no interaction between Productivity or Out and About and age, but greater participation in both of these domains was associated with greater life satisfaction across age groups. CONCLUSIONS: These findings indicate that greater participation is associated with increased satisfaction with life in older adults, across all participation domains over the first 10 years postinjury, suggesting that rehabilitation should target improving participation even in older adults. The decreased association of social relations with satisfaction with life in the oldest age group suggests that frequency of social relations may not be as important for life satisfaction in the oldest adults, but quality may still be important.

Characterizing Health Literacy and Its Correlates Among Individuals With Traumatic Brain Injury (TBI): A TBI Model Systems Study.

OBJECTIVE: To characterize health literacy among individuals with traumatic brain injury (TBI) at least a year postinjury and to explore its relationship to sociodemographic variables, injury severity, and cognition. SETTING: Community following discharge from inpatient rehabilitation. PARTICIPANTS: In total, 205 individuals with complicated mild to severe TBI who completed follow-up as part of a national longitudinal study of TBI and completed a web-based health literacy measure. DESIGN: Multicenter, cross-sectional, observational study. MAIN MEASURES: Health Literacy Assessment Using Talking Touchscreen Technology. RESULTS: Thirty-one percent of the sample demonstrated marginal/inadequate health literacy; 69% demonstrated adequate health literacy. A higher proportion of non-Hispanic White adults had adequate health literacy than non-Hispanic Black and Hispanic adults. Individuals with greater than a high school education were more likely to have adequate health literacy than those with a high school education or less. Better executive functioning performance was related to adequate health literacy. Better episodic memory performance was related to adequate health literacy, but only for those with complicated mild to moderate injury. CONCLUSIONS: A substantial proportion of individuals with TBI have marginal/inadequate health literacy, which may impact their understanding, appreciation, and use of health-related information and recommendations. While low health literacy may be preexisting, directly related to TBI, or a combination of both, it should be screened and considered by professionals when communicating with persons with TBI. Healthcare providers should tailor their communication approaches and presentation of health information, particularly for those with low health literacy.

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.

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.

The Relationship of Health Literacy to Health Outcomes Among Individuals With Traumatic Brain Injury: A Traumatic Brain Injury Model Systems Study.

OBJECTIVE: To examine the associations between health literacy and health outcomes among individuals with traumatic brain injury (TBI) at least a year post-injury. SETTING: Community following discharge from inpatient rehabilitation. PARTICIPANTS: A total of 205 individuals with complicated mild to severe TBI who completed a TBI Model Systems National Database follow-up interview and a web-based health literacy measure. DESIGN: A multicenter, cross-sectional, observational study. MAIN MEASURES: The Health Literacy Assessment Using Talking Touchscreen Technology (Health LiTT), number of comorbid conditions (Medical and Mental Health Comorbidities Interview [MMHCI]), perceived physical and mental health (PROMIS Global Physical and Mental Health subscales), Patient Health Questionnaire-9 (PHQ-9), and Generalized Anxiety Disorder-7 (GAD-7). RESULTS: After controlling for sociodemographic, injury, cognition, and time post-injury, adequate health literacy was associated with higher odds of greater perceived physical health compared with participants with marginal/inadequate health literacy (odds ratio = 4.10; CI = 1.52-11.70]. Participants with inadequate/marginal health literacy had 3.50 times greater odds of depression (PHQ-9 ≥ 10) compared with those with adequate health literacy. Participants 45 years and older reported a greater number of MMHCI physical health conditions, but fewer MMHCI mental health conditions and GAD-7 anxiety symptoms compared with those who were younger. Non-Hispanic White participants and those with mild/moderate TBI were more likely to report a greater number of MMHCI mental health conditions compared with non-Hispanic Black participants or those with severe TBI. Greater time post-injury was associated with greater number of chronic physical and mental health conditions, and less odds of good-to-excellent perceived global mental health. CONCLUSIONS: Inadequate health literacy is associated with worse perceived physical health and greater depressive symptoms among adults with TBI. Greater efforts are needed to explore the mechanisms by which health literacy influences chronic disease management and mental health after TBI to improve postinjury health status and outcomes, particularly among those with limited health literacy skills.

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.

Effectiveness of care models for chronic disease management: A scoping review of systematic reviews.

OBJECTIVE: To conduct a scoping review of models of care for chronic disease management to identify potentially effective components for management of chronic traumatic brain injury (TBI). METHODS: Information sources: Systematic searches of three databases (Ovid MEDLINE, Embase, and Cochrane Database of Systematic Reviews) from January 2010 to May 2021. ELIGIBILITY CRITERIA: Systematic reviews and meta-analyses reporting on the effectiveness of the Chronic Care Model (CCM), collaborative/integrated care, and other chronic disease management models. DATA: Target diseases, model components used (n = 11), and six outcomes (disease-specific, generic health-related quality of life and functioning, adherence, health knowledge, patient satisfaction, and cost/health care use). SYNTHESIS: Narrative synthesis, including proportion of reviews documenting outcome benefits. RESULTS: More than half (55%) of the 186 eligible reviews focused on collaborative/integrated care models, with 25% focusing on CCM and 20% focusing on other chronic disease management models. The most common health conditions were diabetes (n = 22), depression (n = 16), heart disease (n = 12), aging (n = 11), and kidney disease (n = 8). Other single medical conditions were the focus of 22 reviews, multiple medical conditions of 59 reviews, and other or mixed mental health/behavioral conditions of 20 reviews. Some type of quality rating for individual studies was conducted in 126 (68%) of the reviews. Of reviews that assessed particular outcomes, 80% reported disease-specific benefits, and 57% to 72% reported benefits for the other five types of outcomes. Outcomes did not differ by the model category, number or type of components, or target disease. CONCLUSIONS: Although there is a paucity of evidence for TBI per se, care model components proven effective for other chronic diseases may be adaptable for chronic TBI care.

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.

The Dosing of Mobile-Based Just-in-Time Adaptive Self-Management Prompts for Caregivers: Preliminary Findings From a Pilot Microrandomized Study.

BACKGROUND: Caregivers of people with chronic illnesses often face negative stress-related health outcomes and are unavailable for traditional face-to-face interventions due to the intensity and constraints of their caregiver role. Just-in-time adaptive interventions (JITAIs) have emerged as a design framework that is particularly suited for interventional mobile health studies that deliver in-the-moment prompts that aim to promote healthy behavioral and psychological changes while minimizing user burden and expense. While JITAIs have the potential to improve caregivers' health-related quality of life (HRQOL), their effectiveness for caregivers remains poorly understood. OBJECTIVE: The primary objective of this study is to evaluate the dose-response relationship of a fully automated JITAI-based self-management intervention involving personalized mobile app notifications targeted at decreasing the level of caregiver strain, anxiety, and depression. The secondary objective is to investigate whether the effectiveness of this mobile health intervention was moderated by the caregiver group. We also explored whether the effectiveness of this intervention was moderated by (1) previous HRQOL measures, (2) the number of weeks in the study, (3) step count, and (4) minutes of sleep. METHODS: We examined 36 caregivers from 3 disease groups (10 from spinal cord injury, 11 from Huntington disease, and 25 from allogeneic hematopoietic cell transplantation) in the intervention arm of a larger randomized controlled trial (subjects in the other arm received no prompts from the mobile app) designed to examine the acceptability and feasibility of this intensive type of trial design. A series of multivariate linear models implementing a weighted and centered least squares estimator were used to assess the JITAI efficacy and effect. RESULTS: We found preliminary support for a positive dose-response relationship between the number of administered JITAI messages and JITAI efficacy in improving caregiver strain, anxiety, and depression; while most of these associations did not meet conventional levels of significance, there was a significant association between high-frequency JITAI and caregiver strain. Specifically, administering 5-6 messages per week as opposed to no messages resulted in a significant decrease in the HRQOL score of caregiver strain with an estimate of -6.31 (95% CI -11.76 to -0.12; P=.046). In addition, we found that the caregiver groups and the participants' levels of depression in the previous week moderated JITAI efficacy. CONCLUSIONS: This study provides preliminary evidence to support the effectiveness of the self-management JITAI and offers practical guidance for designing future personalized JITAI strategies for diverse caregiver groups. TRIAL REGISTRATION: ClinicalTrials.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591.

The reliability and validity of the TBI-CareQOL system in four diverse caregiver groups.

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.

Developing multidimensional participation profiles after traumatic brain injury: a TBI model systems study.

Purpose. To characterize societal participation profiles after moderate-severe traumatic brain injury (TBI) along objective (Frequency) and subjective (Satisfaction, Importance, Enfranchisement) dimensions.Materials and Methods. We conducted secondary analyses of a TBI Model Systems sub-study (N = 408). Multiaxial assessment of participation included the Participation Assessment with Recombined Tools-Objective and -Subjective questionnaires (Participation Frequency and Importance/Satisfaction, respectively) and the Enfranchisement Scale. Participants provided responses via telephone interview 1-15 years post-injury. Multidimensional participation profiles (classes) were extracted using latent profile analysis.Results. A 4-class solution was identified as providing maximal statistical separation between profiles and being clinically meaningful based on profile demographic features. One profile group (48.5% of the sample) exhibited the "best" participation profile (High Frequency, Satisfaction, Importance, and Enfranchisement) and was also the most advantaged according to socioeconomic indicators. Other profile groups showed appreciable heterogeneity across participation dimensions. Age, race/ethnicity, education level, ability to drive, and urbanicity were features that varied between profiles.Conclusions. Societal participation is a critical, but inherently complex, TBI outcome that may not be adequately captured by a single index. Our data underscore the importance of a multidimensional approach to participation assessment and interpretation using profiles. The use of participation profiles may promote precision health interventions for community integration.Implications for RehabilitationOur study found unidimensional measures of societal participation in traumatic brain injury (TBI) populations that focus exclusively on frequency indicators may be overly simplistic and miss key subjective components of participationTaking a multidimensional perspective, we documented four meaningfully distinct participation subgroups (including both objective and subjective dimensions of societal participation) within the TBI rehabilitation populationMultidimensional profiles of participation may be used to group individuals with TBI into target groups for intervention (e.g., deeper goal assessment for individuals who do not rate standard participation activities as important, but also do not participate and do not feel enfranchised).

Traumatic brain injury as a chronic disease: insights from the United States Traumatic Brain Injury Model Systems Research Program.

Traumatic brain injury (TBI) is a global health priority, associated with substantial burden. Historically conceptualised as an injury event with finite recovery, TBI is now recognised as a chronic condition that can affect multiple domains of health and function, some of which might deteriorate over time. Many people who have had a TBI remain moderately to severely disabled at 5 years, are rehospitalised up to 10 years post-injury, and have a reduced lifespan relative to the general population. Understanding TBI as a chronic disease process can be highly informative for optimising care, which has traditionally focused on acute care. Chronic brain injury care models must be informed by a holistic understanding of long-term outcomes and the factors that can affect how care needs evolve over time. The United States Traumatic Brain Injury Model Systems of Care follows up individuals with moderate-to-severe TBI for over 30 years, allowing characterisation of the chronic (2-30 years or more post injury) functional, cognitive, behavioural, and social sequelae experienced by individuals who have had a moderate-to-severe TBI and the implications for their health and quality of life. Older age, social determinants of health, and lower acute functional status are associated with post-recovery deterioration, while younger age and greater functional independence are associated with risky health behaviours, including substance misuse and re-injury. Systematically collected data on long-term outcomes across multiple domains of health and function are needed worldwide to inform the development of models for chronic disease management, including the proactive surveillance of commonly experienced health and functional challenges.