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OBJECTIVE: It is not currently possible to predict long-term functional dependency in patients with disorders of consciousness (DoC) after traumatic brain injury (TBI). Our objective was to fit and externally validate a prediction model for 1-year dependency in patients with DoC ≥ 2 weeks after TBI. METHODS: We included adults with TBI enrolled in TBI Model Systems (TBI-MS) or Transforming Research and Clinical Knowledge in TBI (TRACK-TBI) studies who were not following commands at rehabilitation admission or 2 weeks post-injury, respectively. We fit a logistic regression model in TBI-MS and validated it in TRACK-TBI. The primary outcome was death or dependency at 1 year post-injury, defined using the Disability Rating Scale. RESULTS: In the TBI-MS Discovery Sample, 1,960 participants (mean age 40 [18] years, 76% male, 68% white) met inclusion criteria, and 406 (27%) were dependent 1 year post-injury. In a TBI-MS held out cohort, the dependency prediction model's area under the receiver operating characteristic curve was 0.79 (95% CI 0.74-0.85), positive predictive value was 53% and negative predictive value was 86%. In the TRACK-TBI external validation (n = 124, age 40 [16] years, 77% male, 81% white), the area under the receiver operating characteristic curve was 0.66 (0.53, 0.79), equivalent to the standard IMPACTcore + CT score (p = 0.8). INTERPRETATION: We developed a 1-year dependency prediction model using the largest existing cohort of patients with DoC after TBI. The sensitivity and negative predictive values were greater than specificity and positive predictive values. Accuracy was diminished in an external sample, but equivalent to the IMPACT model. Further research is needed to improve dependency prediction in patients with DoC after TBI. ANN NEUROL 2023;94:1008-1023.
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Lesões Encefálicas Traumáticas , Lesões Encefálicas , Adulto , Humanos , Masculino , Feminino , Transtornos da Consciência/diagnóstico , Transtornos da Consciência/etiologia , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas/reabilitação , Valor Preditivo dos Testes , Estado Funcional , PrognósticoRESUMO
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.
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Sintomas Afetivos , Lesões Encefálicas Traumáticas , Empatia , Satisfação Pessoal , Resiliência Psicológica , Humanos , Masculino , Feminino , Sintomas Afetivos/psicologia , Adulto , Estudos Longitudinais , Pessoa de Meia-Idade , Lesões Encefálicas Traumáticas/psicologia , Emoções , Lesões Encefálicas/psicologiaRESUMO
OBJECTIVE: Although headache (HA) is a common sequela of traumatic brain injury (TBI), early predictors of chronic HA after moderate to severe TBI are not well established, and the relationship chronic HA has with psychosocial functioning is understudied. Thus, we sought to (1) determine demographic and injury predictors of chronic HA 1 or more years after moderate to severe TBI and (2) examine associations between chronic HA and psychosocial outcomes. SETTING: Community. PARTICIPANTS: Participants in the TBI Model System (TBIMS) with moderate to severe TBI who consented for additional chronic pain questionnaires at the time of TBIMS follow-up. DESIGN: Multisite, observational cohort study using LASSO (least absolute shrinkage and selection operator) regression for prediction modeling and independent t tests for psychosocial associations. MAIN OUTCOME MEASURES: Chronic HA after TBI at year 1 or 2 postinjury and more remotely (5 or more years). RESULTS: The LASSO model for chronic HA at 1 to 2 years achieved acceptable predictability (cross-validated area under the curve [AUC] = 0.70). At 5 or more years, predictability was nearly acceptable (cross-validated AUC = 0.68), but much more complex, with more than twice as many variables contributing. Injury characteristics had stronger predictive value at postinjury years 1 to 2 versus 5 or more years, especially sustained intracranial pressure elevation (odds ratio [OR] = 3.8) and skull fragments on head computed tomography (CT) (OR = 2.5). Additional TBI(s) was a risk factor at both time frames, as were multiple socioeconomic characteristics, including lower education level, younger age, female gender, and Black race. Lower education level was a particularly strong predictor at 5 or more years (OR up to 3.5). Emotional and participation outcomes were broadly poorer among persons with chronic HA after moderate to severe TBI. CONCLUSIONS: Among people with moderate to severe TBI, chronic HA is associated with significant psychosocial burden. The identified risk factors will enable targeted clinical screening and monitoring strategies to enhance clinical care pathways that could lead to better outcomes. They may also be useful as stratification or covariates in future clinical trial research on treatments.
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Lesões Encefálicas Traumáticas , Lesões Encefálicas , Transtornos da Cefaleia , Humanos , Feminino , Lesões Encefálicas/psicologia , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/diagnóstico , Estudos de Coortes , Cefaleia , Transtornos da Cefaleia/complicaçõesRESUMO
OBJECTIVE: To examine the relationship between extreme pain phenotypes (interference and improvement) and psychosocial outcomes among those with chronic pain after traumatic brain injury (TBI). SETTING: Community. PARTICIPANTS: In total, 1762 TBI Model Systems (TBIMS) participants 1 to 30 years postinjury reporting chronic pain. DESIGN: Multisite, cross-sectional, observational cohort study. PRIMARY MEASURES: Life satisfaction, posttraumatic stress, depression and anxiety symptoms, sleep and participation, the Brief Pain Inventory (BPI) interference scale, and the Patient's Global Impression of Change (PGIC). RESULTS: Persons in the extreme high interference phenotype (vs extreme low interference phenotype) and/or extreme no change phenotype (vs extreme improvement phenotype) had poorer psychosocial outcomes, with extreme pain interference phenotypes having a larger effect on outcomes than extreme perceived improvement phenotypes. After controlling for covariates, large effect sizes (ES) related to pain interference were observed for posttraumatic stress symptoms (ES = -1.14), sleep quality (ES = -1.10), depression (ES = -1.08), anxiety (ES = -0.82), and life satisfaction (ES = 0.76); effect sizes for participation outcomes, although significant, were relatively small (ES = 0.21-0.36). Effect sizes related to perceived improvement were small for life satisfaction (ES = 0.20) and participation (ES = 0.16-0.21) outcomes. Pain intensity was identified as a meaningful confounding factor of the relationships between extreme phenotypes and posttraumatic stress, depression, anxiety, and sleep quality. CONCLUSIONS: Examination of extreme phenotypes provides important insights into the experience of individuals living with chronic pain and TBI. Results suggest that the relationships among a variety of characteristics of the person, their experience with pain, and treatment of pain are complex. Further research is needed to better understand these complex relationships and how differences in pain interference and perceived improvement from treatment can assist in assessment and treatment of chronic pain after TBI.
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Lesões Encefálicas Traumáticas , Dor Crônica , Humanos , Dor Crônica/etiologia , Estudos Transversais , Lesões Encefálicas Traumáticas/complicações , Ansiedade/epidemiologia , Ansiedade/etiologiaRESUMO
OBJECTIVE: To define and characterize extreme phenotypes based on pain interference for persons with chronic pain following traumatic brain injury (TBI). SETTING: Eighteen Traumatic Brain Injury Model System (TBIMS) Centers. PARTICIPANTS: A total of 1762 TBIMS participants 1 to 30 years post-injury reporting chronic pain at their most recent follow-up interview. PRIMARY MEASURES: The Brief Pain Inventory (BPI) interference scale, sociodemographic, injury, functional outcome, pain, and treatment characteristics. RESULTS: Participants were predominantly male (73%), White (75%), middle-aged (mean 46 years), and who were injured in motor vehicle accidents (53%) or falls (20%). Extreme phenotypes were identified based on upper and lower 25th percentiles to create low-interference ( n = 441) and high-interference ( n = 431) extreme phenotypes. Bivariate comparisons found several sociodemographic, injury, function, pain, and treatment differences between extreme phenotype groups, including significant differences ( P < .001) on all measures of concurrent function with those in the low-interference extreme phenotype experiencing better function than those in the high-interference extreme phenotype. Lasso regression combined with logistic regression identified multivariable predictors of low- versus high-interference extreme phenotypes. Reductions in the odds of low- versus high-interference phenotypes were significantly associated with higher pain intensity (odds ratio [OR] = 0.33), having neuropathic pain (OR = 0.40), migraine headache (OR = 0.41), leg/feet pain (OR = 0.34), or hip pain (OR = 0.46), and more pain catastrophizing (OR = 0.81). CONCLUSION: Results suggest that for those who experience current chronic pain, there is high variability in the experience and impact of pain. Future research is needed to better understand how pain experience impacts individuals with chronic pain and TBI given that pain characteristics were the primary distinguishing factors between phenotypes. The use of extreme phenotypes for pain interference may be useful to better stratify samples to determine efficacy of pain treatment for individuals with TBI.
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Lesões Encefálicas Traumáticas , Dor Crônica , Pessoa de Meia-Idade , Humanos , Masculino , Feminino , Dor Crônica/etiologia , Lesões Encefálicas Traumáticas/complicações , EncéfaloRESUMO
OBJECTIVE: To define and characterize extreme phenotypes based on perceived improvement in pain for persons with chronic pain following traumatic brain injury (TBI). SETTING: Eighteen Traumatic Brain Injury Model System (TBIMS) Centers. PARTICIPANTS: A total of 1762 TBIMS participants 1 to 30 years post-injury reporting chronic pain at their most recent follow-up interview. PRIMARY MEASURES: The Patient's Global Impression of Change (PGIC) related to pain treatment. Sociodemographic, injury, functional outcome, pain, and pain treatment characteristics. RESULTS: Participants were mostly male (73%), White (75%), middle-aged (mean 46 years), injured in motor vehicle accidents (53%), or falls (20%). Extreme phenotypes were created for an extreme improvement phenotype ( n = 512, 29.8%) defined as "moderately better" or above on the PGIC and an extreme no-change group ( n = 290, 16.9%) defined as no change or worse. Least absolute shrinkage and selection operator (LASSO) regression combined with logistic regression identified multivariable predictors of improvement versus no-change extreme phenotypes. Higher odds of extreme improvement phenotype were significantly associated with being female (odds ratio [OR] = 1.85), married versus single (OR = 2.02), better motor function (OR = 1.03), lower pain intensity (OR = 0.78), and less frequent pain, especially chest pain (OR = 0.36). Several pain treatments were associated with higher odds of being in the extreme improvement versus no-change phenotypes including pain medication (OR = 1.85), physical therapy (OR = 1.51), yoga (OR = 1.61), home exercise program (OR = 1.07), and massage (OR = 1.69). CONCLUSION: Investigation of extreme phenotypes based on perceived improvement with pain treatment highlights the ability to identify characteristics of individuals based on pain treatment responsiveness. A better understanding of the biopsychosocial characteristics of those who respond and do not respond to pain treatments received may help inform better surveillance, monitoring, and treatment. With further research, the identification of risk factors (such as pain intensity and frequency) for treatment response/nonresponse may provide indicators to prompt changes in care for individuals with chronic pain after TBI.
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Lesões Encefálicas Traumáticas , Dor Crônica , Pessoa de Meia-Idade , Humanos , Masculino , Feminino , Dor Crônica/etiologia , Dor Crônica/terapia , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/epidemiologia , Fatores de Risco , Terapia por Exercício , EncéfaloRESUMO
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.
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Lesões Encefálicas Traumáticas , Dor Crônica , Autogestão , Idoso , Humanos , Lesões Encefálicas Traumáticas/diagnóstico , Lesões Encefálicas Traumáticas/terapia , Doença Crônica , Qualidade de VidaRESUMO
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.
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Lesões Encefálicas Traumáticas , Satisfação Pessoal , Qualidade de Vida , Participação Social , Humanos , Lesões Encefálicas Traumáticas/reabilitação , Lesões Encefálicas Traumáticas/psicologia , Masculino , Feminino , Idoso , Pessoa de Meia-Idade , Fatores Etários , Fatores de Tempo , Idoso de 80 Anos ou maisRESUMO
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.
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OBJECTIVE: To determine if the interaction of opiate misuse and marijuana use frequency is associated with behavioral health outcomes. SETTING: Community. PARTICIPANTS: Three thousand seven hundred fifty participants enrolled in the Traumatic Brain Injury Model Systems who completed the Pain Survey and had complete opioid use and marijuana use information. DESIGN: Cross-sectional, secondary analysis from a multisite observational cohort. MAIN OUTCOME MEASURES: Clinically significant behavioral health symptoms for posttraumatic stress disorder (PTSD), depression, anxiety, and sleep quality. RESULTS: Three thousand five hundred thirty-five (94.3%) participants did not misuse opiates, 215 (5.7%) did misuse opiates (taking more opioid pain medication than prescribed and/or using nonprescription opioid pain medication); 2683 (70.5%) participants did not use marijuana, 353 (9.3%) occasionally used marijuana (less than once a week), and 714 (18.8%) regularly used marijuana (once a week or more frequently). There was a statistically significant relationship (P < .05) between the interaction of opiate misuse and marijuana use frequency and all behavioral health outcomes and several covariates (age, sex, cause of injury, severity of injury, and pain group category). Pairwise comparisons confirm that statistically significant associations on behavioral health outcomes are driven by endorsing opiate misuse and/or regular marijuana use, but occasional marijuana use was not associated. CONCLUSIONS: Higher odds of clinically significant PTSD, depression, anxiety, and poor sleep quality are present in people with traumatic brain injury (TBI) who misuse opiates and/or who use marijuana regularly. In the absence of opiate misuse, regular marijuana use had higher odds of worse behavioral health outcomes than occasional and no use. The interaction of opiate misuse and regular marijuana use yielded the highest odds. Individuals with TBI should be informed of the relationship of substance use and behavioral health outcomes and that current chronic pain may mediate the association.
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Lesões Encefálicas Traumáticas , Dor Crônica , Uso da Maconha , Alcaloides Opiáceos , Transtornos Relacionados ao Uso de Opioides , Humanos , Analgésicos Opioides/uso terapêutico , Uso da Maconha/tratamento farmacológico , Estudos Transversais , Transtornos Relacionados ao Uso de Opioides/epidemiologia , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Dor Crônica/tratamento farmacológico , Dor Crônica/epidemiologia , Alcaloides Opiáceos/uso terapêutico , Lesões Encefálicas Traumáticas/epidemiologia , Lesões Encefálicas Traumáticas/tratamento farmacológico , Avaliação de Resultados em Cuidados de SaúdeRESUMO
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.
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Lesões Encefálicas Traumáticas , Dor Crônica , Humanos , Dor Crônica/epidemiologia , Dor Crônica/terapia , Estudos Transversais , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/epidemiologiaRESUMO
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.
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Lesões Encefálicas Traumáticas , Dor Crônica , Humanos , Dor Crônica/terapia , Acessibilidade aos Serviços de Saúde , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/psicologia , Cuidadores/psicologia , Pesquisa QualitativaRESUMO
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.
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Lesões Encefálicas Traumáticas , Dor Crônica , Humanos , Dor Crônica/diagnóstico , Dor Crônica/etiologia , Dor Crônica/terapia , Pesquisa Qualitativa , Disparidades em Assistência à Saúde , Qualidade da Assistência à Saúde , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/diagnósticoRESUMO
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.
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Lesões Encefálicas Traumáticas , Dor Crônica , Humanos , Criança , Estudos Transversais , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/epidemiologia , Comorbidade , Ansiedade/epidemiologiaRESUMO
PURPOSE: To determine how life satisfaction changes across the first 10 years following traumatic brain injury (TBI). METHODS: Participants included 1,941 individuals from the TBI Model Systems database with life satisfaction data at 1-, 5-, and 10-years post-TBI. Based on Satisfaction With Life Scale scores, individuals were characterized as having one of the five 10-year life satisfaction trajectories: 'Stable High,' 'Stable Low,' 'Increased to High,' 'Decreased to Low,' and 'Unstable.' These were analyzed for group differences in demographics and psychosocial and functional outcomes. RESULTS: Sixty percent participants had 'Stable High' or 'Increasing to High' trajectories. Approximately 25% had "Stable Low' or 'Decreasing to Low' trajectories, and approximately 15% had unstable trajectories. Higher life satisfaction trajectories were associated with the best psychosocial and functional outcomes whereas lower trajectories were associated with the worst psychosocial and functional outcomes. Trajectories were indistinguishable based on demographics. CONCLUSION: Life satisfaction over the first 10 years following TBI is dynamic, with most individuals reporting high life satisfaction by 10 years post-TBI. Examination of psychosocial and functional factors related to life satisfaction trajectories may inform community-based intervention recommendations, resources, and supports to maximize long-term satisfaction with life.
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Lesões Encefálicas Traumáticas , Satisfação Pessoal , Qualidade de Vida , Humanos , Lesões Encefálicas Traumáticas/psicologia , Lesões Encefálicas Traumáticas/complicações , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Adulto Jovem , Fatores de Tempo , AdolescenteRESUMO
OBJECTIVE: To compare barriers and facilitators to accessing health care services among service members and veterans (SMVs) by traumatic brain injury (TBI) severity groups. DESIGN: Qualitative descriptive study guided by an access to health care services conceptual framework. SETTING: Five Veterans Affairs (VA) polytrauma rehabilitation centers. PARTICIPANTS: SMVs (N=55, including 10 caregivers as proxies) ≥2 years post-TBI recruited from the VA TBI Model Systems and grouped by TBI severity (mild/moderate, severe). MAIN OUTCOME MEASURES: Barriers and facilitators accessing care. RESULTS: The main facilitators included ease of communicating with providers to help SMVs identify and utilize appropriate health care, family advocates who promoted engagement in health care, ability to use government and community facilities, and online resources or equipment. Distance to services was uniformly identified as a main barrier for both patient groups. However, facilitators and barriers to health care access differed by TBI severity. SMVs with severe TBI highlighted the role of nonprofit organizations in promoting health care engagement and the availability of VA specialty residential programs in meeting health care needs. Having unrecognized health care needs in chronic stages and communication difficulties with providers were more commonplace for those with greater TBI severity and affected quality of care. Those with mild/moderate TBI highlighted challenges associated with paying for services in the community and scheduling of services. CONCLUSIONS: Barriers and facilitators exist across multiple dimensions of a health care access framework and vary by TBI severity. Results suggest possible mechanistic links between health care access and SMV health outcomes. Findings support current policy and practice efforts to facilitate health care access for SMVs with TBI but highlight the need for tailored approaches for those with greater disability.
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Lesões Encefálicas Traumáticas , Militares , Veteranos , Humanos , Acessibilidade aos Serviços de Saúde , Pesquisa Qualitativa , Centros de Reabilitação , Lesões Encefálicas Traumáticas/reabilitaçãoRESUMO
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.
Assuntos
Lesões Encefálicas Traumáticas , Lesões Encefálicas , Dor Crônica , Humanos , Etnicidade , Estudos Longitudinais , Estudos Transversais , Lesões Encefálicas/reabilitação , Lesões Encefálicas Traumáticas/complicações , Adaptação PsicológicaRESUMO
OBJECTIVE: To examine the prevalence, severity, and correlates of depression, anxiety, and suicidal ideation in people with traumatic brain injury (TBI) assessed before and during the COVID-19 pandemic. DESIGN: Retrospective cohort study using data collected through the Traumatic Brain Injury Model Systems (TBIMS) network at 1, 2, 5, 10, 15, 20, 25, or 30 years post TBI. SETTING: United States-based TBIMS rehabilitation centers with telephone assessment of community residing participants. PARTICIPANTS: Adults (72.4% male; mean age, 47.2 years) who enrolled in the TBIMS National Database and completed mental health questionnaires prepandemic (January 1, 2017 to February 29, 2020; n=5000) or during pandemic (April 1, 2022 to June 30, 2021; n=2009) (N=7009). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Patient Health Questionnaire-9 and Generalized Anxiety Disorder-7 questionnaire. RESULTS: Separate linear and logistic regressions were constructed with demographic, psychosocial, injury-related, and functional characteristics, along with a binary indicator of COVID-19 pandemic period (prepandemic vs during pandemic), as predictors of mental health outcomes. No meaningful differences in depression, anxiety, or suicidal ideation were observed before vs during the COVID-19 pandemic. Correlations between predictors and mental health outcomes were similar before and during the pandemic. CONCLUSIONS: Contrary to our predictions, the prevalence, severity, and correlates of mental health conditions were similar before and during the COVID-19 pandemic. Results may reflect generalized resilience and are consistent with the most recent findings from the general population that indicate only small, transient increases in psychological distress associated with the pandemic. While unworsened, depression, anxiety, and suicidal ideation remain prevalent and merit focused treatment and research efforts.
Assuntos
Lesões Encefálicas Traumáticas , COVID-19 , Suicídio , Adulto , Humanos , Masculino , Estados Unidos/epidemiologia , Pessoa de Meia-Idade , Feminino , Ideação Suicida , Pandemias , Depressão/epidemiologia , Estudos Retrospectivos , Vida Independente , Pesquisa de Reabilitação , COVID-19/epidemiologia , Lesões Encefálicas Traumáticas/reabilitação , Ansiedade/epidemiologia , Transtornos de Ansiedade/epidemiologiaRESUMO
OBJECTIVE: To investigate whether a functional decline in cognitive activities decades after moderate-to-severe traumatic brain injury (m-sTBI) might relate to injury features and/or lifetime health factors, some of which may emerge as consequences of the injury. DESIGN: Secondary analysis of the TBI Model Systems National Database, a prospective, multi-center, longitudinal study of patients with m-sTBI. SETTING: TBI Model Systems Centers. PARTICIPANTS: Included were 732 participants rated on the cognitive subscale of the Functional Independence Measure (FIM Cognitive), a metric for everyday cognitive skills, across 3 time points out to 20 years (visits at 2-, 10-, and 20-year follow-ups; N=732). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE(S): FIM Cognitive Scale. Injury characteristics such as timing and features pertaining to severity and health-related factors (eg, alcohol use, socioeconomic status) were examined to discriminate stable from declining participants on the FIM Cognitive Scale using logistic regression. RESULTS: At 20 years post-injury, there was a low base rate of FIM Cognitive decline (11%, n=78), with most being stable or having meaningful improvement (89%, n=654). Older age at injury, longer duration of post-traumatic amnesia, and presence of repetitive seizures were significant predictors of FIM Cognitive decline in the final model (area under the curve=0.75), while multiple health-related factors that can represent independent co-morbidities or possible consequences of injury were not. CONCLUSION(S): The strongest contributors to reported functional decline in cognitive activities later-in-life were related to acute characteristics of m-sTBI and experiencing post-traumatic seizures. Future studies are needed integrating functional with performance-based cognitive assessments to affirm conclusions and identify the timeline and trajectory of cognitive decline.
Assuntos
Lesões Encefálicas Traumáticas , Lesões Encefálicas , Humanos , Estudos Longitudinais , Estudos Prospectivos , Lesões Encefálicas/reabilitação , Recuperação de Função Fisiológica , Lesões Encefálicas Traumáticas/complicações , Cognição , Convulsões/complicaçõesRESUMO
OBJECTIVE: To examine the effect of the COVID-19 pandemic on societal participation in people with moderate-to-severe traumatic brain injury (TBI). DESIGN: Cross-sectional retrospective cohort. SETTING: National TBI Model Systems centers, United States. PARTICIPANTS: TBI Model Systems enrollees (N=7003), ages 16 and older and 1-30 years postinjury, interviewed either prepandemic (PP) or during the pandemic (DP). The sample was primarily male (72.4%) and White (69.5%), with motor vehicle collisions as the most common cause of injury (55.1%). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The 3 subscales of the Participation Assessment with Recombined Tools-Objective: Out and About (community involvement), Productivity, and Social Relations. RESULTS: Out and About, but not Productivity or Social Relations, scores were appreciably lower among DP participants compared to PP participants (medium effect). Demographic and clinical characteristics showed similar patterns of association with participation domains across PP and DP. When their unique contributions were examined in regression models, age, self-identified race, education level, employment status, marital status, income level, disability severity, and life satisfaction were variably predictive of participation domains, though most effects were small or medium in size. Depression and anxiety symptom severities each showed small zero-order correlations with participation domains across PP and DP but had negligible effects in regression analyses. CONCLUSIONS: Consistent with the effect of COVID-19 on participation levels in the general population, people with TBI reported less community involvement during the pandemic, potentially compounding existing postinjury challenges to societal integration. The pandemic does not appear to have altered patterns of association between demographic/clinical characteristics and participation. Assessing and addressing barriers to community involvement should be a priority for TBI treatment providers. Longitudinal studies of TBI that consider pandemic-related effects on participation and other societally linked outcomes will help to elucidate the potential longer-term effect the pandemic has on behavioral health in this population.