Family member reported symptom burden, predictors of caregiver burden and treatment effects in a goal-oriented community-based randomized controlled trial in the chronic phase of traumatic brain injury.

BACKGROUND: Family members are often affected by the long-term consequences of traumatic brain injury, but are rarely involved in rehabilitation programs in the chronic phase. We thus do not know what family members´ main concerns are in the chronic phase, what factors are associated with perceived caregiver burden, and whether family members´ health and functioning improves due to rehabilitation efforts received by the patients. This study explored family-members` functioning, predictors of caregiver burden and effect for family members of a goal-oriented intervention in the chronic phase of traumatic brain injury. METHODS: Family members self-reported data measuring their caregiver burden, depression, general health, loneliness, and their evaluation of patient competency in everyday life, patient awareness levels, main problem areas (target outcomes) for the patient related to the brain injury, and demographic data were collected. Regression models were used to explore predictors of caregiver burden, and mixed models analysis was used to explore treatment effects. RESULTS: In total, 73 family members were included, 39 in the intervention group and 34 in the control group. Moderate to high caregiver burden was reported by 40% of family members, and 16% experienced clinical levels of depression. Family member loneliness and their evaluation of the patient`s level of functional competency explained 57% of the variability in caregiver burden. There were no treatment-related changes in caregiver burden, family member depression or general health. At T2 there was however a significant reduction in how family members rated severity of target outcomes that the family members had nominated at baseline (-0.38, 95% CI, -0.75 to -0.02, p = 0.04), but not for the target outcomes the patients had nominated. CONCLUSIONS: A significant proportion of family members to patients in the chronic phase of TBI continue to experience challenging caregiver burden and emotional symptoms. Both family member-related and patient factors contribute to caregiver burden. Interventions targeting patient complaints do not automatically alleviate family members´ burden. It is important to address social support for family members early after injury, and there is a need for more interventions specifically targeting family members´ needs. TRIAL REGISTRATION: The trial was registered at ClinicalTrials.gov, NCT03545594 on the 4th of June 2018.

The Participation Assessment with Recombined Tools-Objective (PART-O): measurement properties of the Norwegian version after traumatic brain injury.

OBJECTIVE: To translate and evaluate the validity of the Participation Assessment with Recombined Tools-Objective (PART-O) in a Norwegian context. METHODS: One hundred and twenty persons with TBI with verified intracranial lesions and persistent symptoms lasting more than 2 years, included in a randomized controlled trial, rated their participation using the PART-O at baseline. The PART-O with its three subscales (Productivity, Out and About, and Social Relations) was translated to Norwegian. Descriptive statistics, Cronbach's alpha, Rasch analysis, and correlation analysis were applied. RESULTS: The Rasch analysis indicated a unidimensional construct of PART-O and its subscales (χ2 < 12.69, p > 0.28). The internal consistency was moderate (Cronbach's alpha 0.48-0.52) and there was a need to reduce scaling options for most of the items. The Out and About and Productivity subscales had considerable floor effects. PART-O showed moderate positive correlation to TBI-related quality of life and global functioning. CONCLUSIONS: PART-O and its subscales reflect unidimensional aspects of participation. In the present Norwegian TBI population the original scaling of PART-O was too detailed for all subscales. The floor effects and suboptimal targeting between items and subjects participation level of the Out and About subscale is a matter of concern.

SMART-goal domains and goal attainment in an individualized, goal-oriented intervention for children with acquired brain injury and their families.

TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT04798859.

Workplace Factors Associated With Return to Work After Mild-to-Moderate Traumatic Brain Injury.

OBJECTIVE: Sociodemographic and injury-related predictors for return to work (RTW) after mild-to-moderate traumatic brain injury (TBI) have been extensively explored. However, there is a knowledge gap regarding work-related predictors of RTW. The main aim of this study was to explore work-related predictors of work participation 6 and 12 months after mild-to-moderate TBI. SETTING: Data were collected at baseline 8 to 12 weeks after injury, and 3, 6, and 12 months after baseline, at a specialized TBI rehabilitation outpatient clinic at Oslo University Hospital, Oslo, Norway. PARTICIPANTS: Eligible patients had suffered a mild-to-moderate TBI 8 to 12 weeks previously, were employed 50% or more at time of injury, were between 18 and 60 years of age, and sick listed 50% or more at time of inclusion due to symptoms of TBI (based on the Rivermead Post-Concussion Symptoms Questionnaire). In total, 116 patients were included in a randomized controlled trial, of whom 113 were included in the 1-year analysis. DESIGN: Patients were originally included in a randomized controlled trial. There were no between-group differences in RTW after 1 year. Thus, the participants were evaluated as one cohort in this study. MAIN MEASURES: The primary outcome measure was work participation 1 year after study inclusion. Work-related predictors were chosen on the basis of previous research and expert opinion and entered into a multivariable linear regression model. The model controlled for sociodemographic and injury-related factors. RESULTS: The best-fitting model explained 25% of variation in work participation at 1 year. Significant predictors were predictability, quantitative demands and rewards (recognition) at the workplace, private or public employment, symptom burden at baseline, and sex. CONCLUSION: In this study, several work-related predictors outperformed some of the established sociodemographic and injury-related predictors of RTW after TBI, thus stressing the need for further focus and research on amendable predictors of RTW after mild-to-moderate TBI.

Stability and Change in Biopsychosocial Factors Associated With Fatigue 6 and 12 Months After Traumatic Brain Injury: An Exploratory Multilevel Study.

OBJECTIVE: To explore factors associated with stability and change in fatigue from 6 to 12 months following traumatic brain injury (TBI). SETTING: Combined in- and outpatient acute care and postacute rehabilitation settings. PARTICIPANTS: A total of 103 patients with confirmed intracranial injury were assessed 6 and/or 12 months following TBI. DESIGN: A prospective observational study with repeated measures at 2 time points, analyzed with a hybrid mixed-effects model. MAIN MEASURES: Primary outcomes were the fatigue factor derived from items from several fatigue patient-reported outcome measures (PROMs; Fatigue Severity Scale, Chalder Fatigue Scale, Giessen Subjective Complaints List-fatigue subscale, and Rivermead Post-Concussion Symptoms Questionnaire-fatigue item) Secondary outcomes were PROMs relating to pain, somatic and psychological distress, insomnia, sleepiness, personality traits, optimism, resilience, behavioral activation and inhibition, and loneliness, as well as neuropsychological measures. Demographic variables and injury severity characteristics were included as covariates. RESULTS: In multilevel regression, female sex, years of education, and 3 factors related to injury severity, somatic vulnerability, and psychosocial robustness were all significantly associated with variation in fatigue between subjects, and explained 61% of the variance in fatigue that was due to stable between-subject differences. Fatigue levels declined significantly over time. Changes in pain severity, somatic symptom burden, psychological distress, and behavioral inhibition were positively associated with changes in fatigue, explaining 22% of the variance in fatigue within subjects. CONCLUSIONS: The study demonstrated that several previously implicated factors show robust effects in distinguishing individuals with TBI on levels of fatigue, but only a few show additional within-subject associations across time. Pain severity, somatic symptom burden, psychological distress, and behavioral inhibition correlated with fatigue across time, implicating these factors as crucial targets for rehabilitation of patients with TBI who suffer from persistent fatigue.

Almost half of children and adolescents had unmet need 6 months after their traumatic brain injury.

AIM: Very few studies have focused on how children with traumatic brain injuries (TBI) access and use publicly funded healthcare and educational services. We aimed to compare the symptoms, recovery and service use of children with TBIs and a control group with other traumatic injuries. METHODS: This case-control study was conducted at Oslo University Hospital, Norway, from 2015 to 2020. It focused on 49 patients aged 1-15 years who were hospitalised with TBIs and compared them with 51 matched patients with other traumatic injuries. Unmet needs were based on reports from parents, patients and clinicians 6 months after the injury. RESULTS: Many children hospitalised after TBIs experienced persistent cognitive and emotional symptoms that effected their return to school and subsequent social interactions. These were associated with reduced quality of life. Nearly half (47%) of the children in the TBI group had unmet needs after 6 months, compared to 12% of the controls. Patients with TBIs also had more symptoms and showed less favourable recoveries than the controls. CONCLUSION: Paediatric patients with TBIs had long-term cognitive and emotional symptoms that affected their return to school and social functioning. Almost half of them had unmet needs 6 months after their acute injury.

Children's, parents', and teachers' experiences of the feasibility of a telerehabilitation intervention for children with acquired brain injury in the chronic phase - a qualitative study of acceptability and participation in the Child In Context Intervention (CICI).

BACKGROUND: This is a qualitative feasibility study of the Child in Context Intervention (CICI). The CICI is an individualized, goal-oriented and home-based tele-rehabilitation intervention which targets everyday functioning of children (6-16 years) with acquired brain injury in the chronic stage, and their families, one year or more after insult, who have ongoing challenges (physical, cognitive, behavioral, social and/or psychological). The aim of this study is to better understand how children, parents and teachers experienced participation and acceptability; to develop knowledge about the mechanisms of change, and to explore how the CICI was tailored to the context. METHODS: Six families and schools participated in the intervention, which comprised seven tele-rehabilitation sessions in which the child and parent participated, one in-person parent seminar and four digital school meetings. A multidisciplinary team delivered the intervention to 23 participants over a 4- to 5-month period. The intervention involved psychoeducation about targeted acquired brain injury-related problems, such as fatigue, pain, or social challenges. All but one consented to participate in the current digital interview study. The data were analyzed using content analysis. RESULTS: The experience of participation and acceptability varied among the children. Attendance was consistently high; the child participants felt mostly listened to and could influence goal setting and strategies. However, engaging and motivating the child participants proved somewhat challenging. The parents found the CICI rewarding, useful and relevant. However, they had different experiences regarding which intervention component they perceived as most helpful. Some argued in favor of the 'whole intervention', while others highlighted new knowledge, SMART goals or the school collaboration. The teachers found the intervention acceptable and useful but wanted a better meeting plan. They had difficulties in finding time for meetings, emphasized the involvement of school leaders, and appreciated the digital format. CONCLUSIONS: Overall, the intervention was perceived as acceptable, and the participants felt that the various intervention components contributed to improvements. The CICI's flexibility facilitated tailoring to different contexts based on the children's functional level. The digital format saved time and provided flexibility regarding the amount of attendance but limited full participation from children with more severe cognitive impairments. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04186182.

Prevalence of Oropharyngeal Dysphagia in Adults in Different Healthcare Settings: A Systematic Review and Meta-analyses.

Oropharyngeal dysphagia (OD) is prevalent in the elderly and persons with complex medical conditions, resulting in considerable medical and psychosocial consequences and reduced quality of life. Many prevalence studies regard OD in relation to age or diagnosis. Knowledge on the prevalence of OD in different healthcare settings is lacking. This systematic review aimed to estimate the prevalence of OD in adults admitted to hospitals, rehabilitation facilities, nursing homes, and palliative care facilities through meta-analyses. A systematic literature search was completed including all dates up to March 30, 2021. The methodology and reporting were based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Forty-four out of 1,956 screened articles were deemed eligible. Considerable heterogeneity in definitions of OD and type and quality of selected outcome measures were observed. Overall within-group pooled prevalence estimates for OD determined by meta-analysis were 36.5% (95% CI 29.9 - 43.6) in the hospital setting, 42.5% (95% CI 35.8 - 49.5) in the rehabilitation setting, and 50.2% (95% CI 33.3-67.2) in nursing homes. No OD prevalence data were identified for palliative care facilities. Results for between-group analyses of OD prevalence estimates in the hospital setting were non-significant for type of assessment method, diagnostic group, and type of hospital ward, but indicated significantly higher prevalence estimates in nursing homes when using screening compared to patient-report. Future research should provide OD prevalence data for palliative care, achieve consensus in OD-related terminology when performing prevalence studies, and use screening and assessments with optimal diagnostic performance and psychometric properties.

"Manoeuvring in uncharted waters - a balancing act": A qualitative exploration of treatment and improvement after mild traumatic brain injury.

Background: Individuals who have sustained mild traumatic brain injury (mTBI) with a protracted course of recovery may experience long-lasting somatic, cognitive, and emotional symptoms affecting activities of daily living. There is limited knowledge regarding individuals' lived experiences with treatments and advice provided.Purpose: To explore how individuals with mTBI describe and make sense of their injury, recovery process, and their experiences with various treatment approaches.Methods: Eight participants with mTBI were recruited from the intervention group in an ongoing randomized controlled trial regarding return-to-work. They were interviewed once after treatment delivery using a qualitative hermeneutical approach. Thematic analysis was applied, and findings are discussed in light of a salutogenic theory.Results: Participants expressed uncertainty regarding conflicting advice they received in the early phase of recovery. Three main themes were developed: (1) "Ambiguity and hope"; (2) "Uncertainty concerning activity and rest"; and (3) "To become the person I used to be vs. to become a new version of myself."Conclusion: The findings showed that the participants experienced both uncertainty and hope for further recovery. The recovery process is challenged by the variability of TBI symptoms that affects participation in everyday life, as well as the conflicting advice received by the participants.

Community-Based Interventions After Acquired Brain Injury-A Systematic Review of Intervention Types and Their Effectiveness.

OBJECTIVES: Comprehensive review of existing types and effectiveness of community-based interventions delivered to adults (mean age 18-65 years) with long-lasting (≥6 months) difficulties following acquired brain injury (ABI). DESIGN: Systematic review of controlled intervention studies published until February 2021. MAIN MEASURES: Systematic searches in databases (MEDLINE, PsycINFO, Database of Abstracts of Reviews of Effects [Cochrane Library], and Cochrane Central Register of Controlled Trials [Cochrane Library]) and inclusion of English peer-reviewed full-text articles; randomized or controlled community-based intervention studies; sample size of 20 or more participants; and 3 or more intervention sessions. Two reviewers independently extracted data for the synthesis and assessed the methodological quality. Data extraction included study characteristics, demographics of participants, content and dose of intervention, outcome measures, and findings. RESULT: The search returned 7386 publications, of which 49 eligible studies were included, revealing a diverse range of community-based interventions and a myriad of outcome measures applied for assessing functional capacities, participation, and quality of life in the chronic phase of ABI. Intervention types encompassed 14 holistic, 23 physical, and 12 specific interventions. A large heterogeneity regarding intervention frequency and intensity was found. Meta-analyses performed on the holistic, physical, and specific interventions did not indicate any significant pooled effects but showed highly variable effects between individuals, both in persons with traumatic and nontraumatic brain injuries. CONCLUSIONS: Because of lack of pooled effects within types of community-based interventions, specific evidence-based recommendations within holistic, physical, and specific interventions designed to mitigate long-lasting ABI problems cannot be made. This review highlights the need for future studies to address methodological issues concerning larger sample size, lack of clear description interventions and comparator, missing reports of effects in change scores, need for consistent use of recommended outcome measures, and investigating the wide variety in intervention responsiveness among participants with ABI. Systematic review registration: PROSPERO (CRD42019124949).