Children and families with chronic pediatric acquired brain injury in need of rehabilitation: characteristics and main challenges in daily life.

PURPOSE: To increase our understanding of child and parent characteristics, family functioning and main challenges in daily life in children and families in need of rehabilitation in the chronic phase of pediatric acquired brain injury (pABI). METHODS: Fifty-eight children (aged 6-16, 48% girls) were included at least one year post ABI. Demographics and questionnaire data regarding children's symptom burden, parents' emotional symptoms and family functioning were collected. Children and parents named their main pABI-related challenges in daily life, and these were categorized in accordance with the International Classification of Functioning, Disability and Health (ICF). Descriptive statistical analyses were performed. RESULTS: Parents' emotional symptom loads were high; 22.3% had moderate, moderate-severe or severe depression symptoms while the equivalent number for anxiety symptoms was 17.9%. Problematic family functioning was reported by 32.1% of parents. When asked about their main pABI-related challenges in daily life, 69% of children named school. The most frequent ICF chapters for children and parents were school education, energy and drive functions (mainly fatigue), and emotional functions. Codes spanned across all ICF-domains. CONCLUSIONS: Rehabilitation for pABI should have a broad, interdisciplinary, and family-centered approach, with school, fatigue, and emotional functioning of parents and children as potential core elements.

Rehabilitation for children with ABI in the chronic phase and their families should have a broad, interdisciplinary and biopsychosocial approach.The children's and parents' large focus on school functioning (including social aspects), emotional functioning, and fatigue in the current, heterogeneous sample indicates that these may be candidates for core elements in rehabilitation of children with acquired brain injury.The well-established focus in rehabilitation on «returning to school¼ after ABI may need to be broadened to «coping with school over time¼ for a subset of children.In addition to well-established factors that are important in rehabilitation and family-centered care, we suggest that caregiving burden of families and siblings' functioning should also be considered.

Unmet rehabilitation needs in the first 6 months post-injury in a trauma centre population with moderate-to-severe traumatic injuries.

OBJECTIVE: To describe the needs for subacute inpatient rehabilitation and community-based healthcare services, rehabilitation, and social support in patients with moderate-to-severe traumatic injury in the first 6 months post-injury. Further, to explore associations between sociodemographic and clinical characteristics and unmet needs. DESIGN: Multicentre prospective cohort study. SUBJECTS: Of 601 persons (75% males), mean (standard deviation) age 47 (21) years, admitted to trauma centres in 2020 with moderate-to-severe injury, 501 patients responded at the 6-month follow-up and thus were included in the analyses. METHODS: Sociodemographic and injury-related characteristics were recorded at inclusion. Estimation of needs was assessed with the Rehabilitation Complexity Scale Extended-Trauma and the Needs and Provision Complexity Scale on hospital discharge. Provision of services was recorded 6 months post-injury. Multivariable logistic regressions explored associations between baseline variables and unmet inpatient rehabilitation and community-based service needs. RESULTS: In total, 20% exhibited unmet needs for subacute inpatient rehabilitation, compared with 60% for community-based services. Predictors for unmet community-based service needs included residing in less central areas, profound injury severity, severe head injury, and rehabilitation referral before returning home. CONCLUSION: Inadequate provision of healthcare and rehabilitation services, particularly in the municipalities, resulted in substantial unmet needs in the first 6 months following injury.

Unmet health care needs over the first 2 years after pediatric traumatic brain injury.

AIM: Few studies have addressed how children and adolescents with traumatic brain injuries (TBIs) access health care and educational services. This study aimed to investigate the course of symptoms during the first two years after TBI, whether symptoms implied a need for health care and/or educational services, and the extent of unmet needs. The association between unmet needs and health-related quality of life was also explored. METHODS: This prospective cohort study was conducted at Oslo University Hospital, Norway, from 2015 to 2018. Forty-nine patients aged 1-15 years hospitalized due to TBI were included and followed for 24 months. Registration of symptoms and identification of unmet needs was based on clinical assessment, self-reports and interviews with patients and parents during the acute phase and at 6 and 24 months postinjury. RESULTS: Twenty-five percent of the sample presented with unmet needs at 24 months. Compared to the group with no needs and met needs, these patients reported lasting cognitive and emotional symptoms affecting school and social interaction and scored lower on health-related quality of life. CONCLUSION: Pediatric patients with TBI may have long-term symptom burden affecting school and social functioning, leading to unmet needs if targeted services are not provided.

Hypothalamic subunit volumes and relations to violence and psychopathy in male offenders with or without a psychotic disorder.

The hypothalamus is key to body homeostasis, including regulating cortisol, testosterone, vasopressin, and oxytocin hormones, modulating aggressive behavior. Animal studies have linked the morphology and function of the hypothalamus to aggression and affiliation, with a subregional pattern reflecting the functional division between the hypothalamic nuclei. We explored the relationship between hypothalamic subunit volumes in violent offenders with (PSY-V) and without (NPV) a psychotic disorder, and the association with psychopathy traits. 3T MRI scans (n = 628, all male 18-70 years) were obtained from PSY-V, n = 38, NPV, n = 20, non-violent psychosis patients (PSY-NV), n = 134, and healthy controls (HC), n = 436. The total hypothalamus volume and its eleven nuclei were delineated into five subunits using Freesurfer v7.3. Psychopathy traits were assessed with Psychopathy Checklist-revised (PCL-R). ANCOVAs and linear regressions were used to analyze associations with subunit volumes. Both groups with a history of violence exhibited smaller anterior-superior subunit volumes than HC (NPV Cohen's d = 0.56, p = 0.01 and PSY-V d = 0.38, p = 0.01). There were no significant differences between HC and PSY-NV. PCL-R scores were positively associated with the inferior tubular subunit on a trend level (uncorrected p = 0.045, Cohen's d = 0.04). We found distinct hypothalamic subunit volume reductions in persons with a history of violence independent of concomitant psychotic disorder but not in persons with psychosis alone. The results provide further information about the involvement of the hypothalamus in aggression, which ultimately may lead to the development of targeted treatment for the clinical and societal challenge of aggression and violent behavior.

Functional Outcomes at 6 and 12 Months Post-Injury in a Trauma Centre Population with Moderate-to-Severe Traumatic Injuries.

This study aims to evaluate the global functional outcomes after moderate-to-severe traumatic injury at 6 and 12 months and to examine the sociodemographic and injury-related factors that predict these outcomes. A prospective cohort study was conducted in which trauma patients of all ages with a New Injury Severity Score > 9 who were discharged alive from two regional trauma centres in Norway over a one-year period (2020) were included. The Glasgow Outcome Scale Extended (GOSE) score was used to analyse the functional outcomes. Regression analyses were performed to investigate the predictors of the GOSE score. Follow-up assessments were obtained from approximately 85% of the 601 included patients at both time points. The mean (SD) GOSE score was 6.1 (1.6) at 6 months and 6.4 (1.6) at 12 months, which corresponds to an upper-moderate disability. One-half of the patients had a persistent disability at 12 months post-injury. The statistically significant predictors of a low GOSE score at both time points were more pre-injury comorbidity, a higher number of injuries, and higher estimated rehabilitation needs, whereas a thorax injury with an Abbreviated Injury Scale ≥ 3 predicted higher GOSE scores. A high Glasgow Coma Scale score at admission predicted a higher GOSE score at 6 months. This study strengthens the evidence base for the functional outcomes and predictors in this population.

Factors associated with discharge destination from acute care after moderate-to-severe traumatic injuries in Norway: a prospective population-based study.

BACKGROUND: Previous studies have demonstrated that the trauma population has needs for rehabilitation services that are best provided in a continuous and coordinated way. The discharge destination after acute care is the second step to ensuring quality of care. There is a lack of knowledge regarding the factors associated with the discharge destination for the overall trauma population. This paper aims to identify sociodemographic, geographical, and injury-related factors associated with discharge destination following acute care at trauma centers for patients with moderate-to-severe traumatic injuries. METHODS: A multicenter, population-based, prospective study was conducted with patients of all ages with traumatic injury [New Injury Severity Score (NISS) > 9] admitted within 72 h after the injury to regional trauma centers in southeastern and northern Norway over a 1-year period (2020). RESULTS: In total, 601 patients were included; a majority (76%) sustained severe injuries, and 22% were discharged directly to specialized rehabilitation. Children were primarily discharged home, and most of the patients ≥ 65 years to their local hospital. Depending on the centrality of their residence [Norwegian Centrality Index (NCI) 1-6, where 1 is most central], we found that patients residing in NCI 3-4 and 5-6 areas sustained more severe injuries than patients residing in NCI 1-2 areas. An increase in the NISS, number of injuries, or a spinal injury with an Abbreviated Injury Scale (AIS) ≥ 3 was associated with discharge to local hospitals and specialized rehabilitation than to home. Patients with an AIS ≥ 3 head injury (RRR 6.1, 95% Confidence interval 2.80-13.38) were significantly more likely to be discharged to specialized rehabilitation than patients with a less severe head injury. Age < 18 years was negatively associated with discharge to a local hospital, while NCI 3-4, preinjury comorbidity, and increased severity of injuries in the lower extremities were positively associated. CONCLUSIONS: Two-thirds of the patients sustained severe traumatic injury, and 22% were discharged directly to specialized rehabilitation. Age, centrality of the residence, preinjury comorbidity, injury severity, length of hospital stay, and the number and specific types of injuries were factors that had the greatest influence on discharge destination.

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.

Psychopathy subdomains in violent offenders with and without a psychotic disorder.

BACKGROUND: Violence in psychosis has been linked to antisocial behavior and psychopathy traits. Psychopathy comprises aspects of interpersonal, affective, lifestyle, and antisocial traits which may be differently involved in violent offending by persons with psychotic disorders. We explored psychopathy subdomains among violent offenders with and without a psychotic disorder. METHODS: 46 males, with a history of severe violence, with (n = 26; age 35.85 ± 10.34 years) or without (n = 20; age 39.10 ± 11.63 years) a diagnosis of a psychotic disorder, were assessed with the Psychopathy Checklist-Revised (PCL-R). PCL-R was split into subdomains following the four-facet model. Group differences in total and subdomain scores were analyzed with a general linear model with covariates. RESULTS: Total PCL-R scores did not differ between the groups (p = 0.61, Cohen's d = 0.17). The violent offenders without psychotic disorders had higher facet 2 scores than the patient group with psychotic disorders (p = 0.029, Cohen's d = 0.77). Facet 1, 3, or 4 scores did not differ between the groups. Controlling for age did not alter the results. CONCLUSION: Patients with a psychotic disorder and a history of severe violence have lower affective psychopathy scores than violent offenders without psychotic disorders. This observation may point toward distinct underlying mechanisms for violence and may provide a target for focused treatment and prevention.

Correction: Rehabilitation Needs, Service Provision, and Costs in the First Year Following Traumatic Injuries: Protocol for a Prospective Cohort Study.

[This corrects the article DOI: 10.2196/25980.].

Rehabilitation for children with chronic acquired brain injury in the Child in Context Intervention (CICI) study: study protocol for a randomized controlled trial.

BACKGROUND: Pediatric acquired brain injury (pABI) is associated with long-term cognitive, behavioral, social, and emotional problems, which may affect the quality of life, school, and family functioning. Yet, there is a lack of evidence-based community-centered rehabilitation programs for chronic pABI and these children do not systematically receive comprehensive rehabilitation. The Child In Context Intervention (CICI) study is a pragmatic randomized controlled trial (RCT) for children with chronic pABI, which aims to evaluate the effectiveness of an individualized and goal-oriented intervention targeting everyday functioning of the child and family. METHODS: Children aged 6-16 years with MRI/CT-verified intracranial abnormalities will be included in the CICI study if they have persistent self- or parent-reported cognitive, emotional, and/or behavioral challenges 1 year or more after insult and attend school regularly. A total of 70 families will be randomized 1:1 to an intervention or a control group. The intervention consists of seven family sessions, one parent seminar, and four school sessions delivered over approximately 6 months. The parent seminar will be held in person, and the other sessions will mainly be video based. The children's and families' self-reported major challenges in everyday life will be targeted using SMART goals. Evidence-based strategies, when available, will be applied to achieve the goals, combined with psychoeducation. Goal attainment scaling (GAS) will be used to evaluate goal attainment. Data is collected at baseline and after approximately 6 and 9 months. External assessors are blinded to group allocation. Primary outcomes are parent-reported brain injury symptoms in children and parenting self-efficacy at 9 months of follow-up. Secondary outcomes include child-reported brain injury symptoms, quality of life, executive functioning in daily life, parent emotional symptoms, family functioning, and unmet family health care needs. A process evaluation will be conducted. DISCUSSION: The current study provides an innovative approach to rehabilitation for children in the chronic phase of ABI and their families. This complex intervention may contribute to the development of evidence-based, high-quality rehabilitation for a large patient group, which is underrepresented in clinical research. It may also improve collaboration between specialized rehabilitation facilities, schools, and local health care services. Inclusion for the trial started in April 2021. TRIAL REGISTRATION: ClinicalTrials.gov NCT04798859 . Registered on March 15, 2021.

Unmet Rehabilitation Needs after Traumatic Brain Injury across Europe: Results from the CENTER-TBI Study.

This study aims to assess rehabilitation needs and provision of rehabilitation services for individuals with moderate-to-severe disability and investigate factors influencing the probability of receiving rehabilitation within six months after traumatic brain injury (TBI). Overall, the analyses included 1206 individuals enrolled in the CENTER-TBI study with severe-to-moderate disability. Impairments in five outcome domains (daily life activities, physical, cognition, speech/language, and psychological) and the use of respective rehabilitation services (occupational therapy, physiotherapy, cognitive and speech therapies, and psychological counselling) were recorded. Sociodemographic and injury-related factors were used to investigate the probability of receiving rehabilitation. Physiotherapy was the most frequently provided rehabilitation service, followed by speech and occupational therapy. Psychological counselling was the least frequently accessed service. The probability of receiving a rehabilitative intervention increased for individuals with greater brain injury severity (odds ratio (OR) 1.75, CI 95%: 1.27-2.42), physical (OR 1.92, CI 95%: 1.21-3.05) and cognitive problems (OR 4.00, CI 95%: 2.34-6.83) but decreased for individuals reporting psychological problems (OR 0.57, CI 95%: 1.21-3.05). The study results emphasize the need for more extensive prescription of rehabilitation services for individuals with disability. Moreover, targeted rehabilitation programs, which aim to improve outcomes, should specifically involve psychological services to meet the needs of individuals recovering from TBI.

Rehabilitation Needs, Service Provision, and Costs in the First Year Following Traumatic Injuries: Protocol for a Prospective Cohort Study.

BACKGROUND: Traumatic injuries, defined as physical injuries with sudden onset, are a major public health problem worldwide. There is a paucity of knowledge regarding rehabilitation needs and service provision for patients with moderate and major trauma, even if rehabilitation research on a spectrum of specific injuries is available. OBJECTIVE: This study aims to describe the prevalence of rehabilitation needs, the provided services, and functional outcomes across all age groups, levels of injury severity, and geographical regions in the first year after trauma. Direct and indirect costs of rehabilitation provision will also be assessed. The overarching aim is to better understand where to target future efforts. METHODS: This is a population-based prospective follow-up study. It encompasses patients of all ages with moderate and severe acute traumatic injury (New Injury Severity Score >9) admitted to the regional trauma centers in southeastern and northern Norway over a 1-year period (2020). Sociodemographic and injury data will be collected. Upon hospital discharge, rehabilitation physicians estimate rehabilitation needs. Rehabilitation needs are assessed by the Rehabilitation Complexity Scale Extended-Trauma (RCS E-Trauma; specialized inpatient rehabilitation), Needs and Provision Complexity Scale (NPCS; community-based rehabilitation and health care service delivery), and Family Needs Questionnaire-Pediatric Version (FNQ-P). Patients, family caregivers, or both will complete questionnaires at 6- and 12-month follow-ups, which are supplemented by telephone interviews. Data on functioning and disability, mental health, health-related quality of life measured by the EuroQol Questionnaire (EQ-5D), and needs and provision of rehabilitation and health care services are collected by validated outcome measures. Unmet needs are represented by the discrepancies between the estimates of the RCS E-Trauma and NPCS at the time of a patient's discharge and the rehabilitation services the patient has actually received. Formal service provision (including admission to inpatient- or outpatient-based rehabilitation), informal care, and associated costs will be collected. RESULTS: The project was funded in December 2018 and approved by the Regional Committee for Medical and Health Research Ethics in October 2019. Inclusion of patients began at Oslo University Hospital on January 1, 2020, and at the University Hospital of North Norway on February 1, 2020. As of February 2021, we have enrolled 612 patients, and for 286 patients the 6-month follow-up has been completed. Papers will be drafted for publication throughout 2021 and 2022. CONCLUSIONS: This study will improve our understanding of existing service provision, the gaps between needs and services, and the associated costs for treating patients with moderate and major trauma. This may guide the improvement of rehabilitation and health care resource planning and allocation. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/25980.

Epidemiology of traumatic brain injury in children 15 years and younger in South-Eastern Norway in 2015-16. Implications for prevention and follow-up needs.

OBJECTIVE: This retrospective study aimed to describe the volume, severity, and injury mechanism of all hospital-admitted pediatric traumatic brain injury (pTBI) at Oslo University Hospital (OUH), emphasizing consequences for prevention and factors indicating a need for follow-up programs. METHOD: Data were extracted from the OUH Trauma registry on 176 children, 0-15 years old, admitted to OUH in 2015 and 2016 with a pTBI diagnosis. The dataset contains demographic data, injury mechanism, type, and severity (Glasgow coma scale, GCS; abbreviated injury scale, AIS; injury severity score, ISS), ICD-10 diagnosis codes, level of treatment, and destination of discharge. RESULTS: 79.5% had mild, 9% moderate, and 11.4% severe TBI. The incidence of hospital-treated pTBI in Oslo was 29 per 100,000 per year. The boy: girl ratio was 1.9:1, but in the young teenage group (14-15 years), the ratio was 1:1. Intracranial injury (ICI) identified on CT/MRI was associated with extended hospital stays, with a median of 6 days compared to 1 day for patients without ICI. 27% of the patients assessed as mild TBI at admission had ICI. Children below eight years of age had a higher incidence of moderate and severe ICI from trauma (53% v.s. 28% in children ≥ eight years). CONCLUSION: The injury characteristics of hospital-treated pTBI are in line with other European countries, but we find the boy-girl ratio different as young teenage girls seem to be catching up with the boys. ICI and length of stay should be considered when deciding which patients need follow-up and rehabilitation.

Neuropsychological Impairment, Brain Injury Symptoms, and Health-Related Quality of Life After Pediatric TBI in Oslo.

Descriptions of clinical outcomes in pediatric traumatic brain injury (pTBI) in Scandinavia are sparse. The Oslo site of the European CENTER-TBI study has performed a pTBI outcome study in a hospitalized population. The main objective was to investigate neuropsychological outcomes, self- and parent-reported symptoms associated with brain injury, and quality of life in children aged 1-15 years, 5-8 months after injury. Fifty-two children were included, and 45 completed the assessments. The sample consisted of 15.4% severe, 21.2% moderate, and 63.4% mild TBI. Subjectively experienced problems with concentration and fatigue were reported by the parents of nearly half of the children. Higher brain injury symptom load was associated with lower quality of life, but was unrelated to injury severity. Group average scores of the sample on neuropsychological testing appeared unimpaired relative to normative means aside from lower performance in working memory. However, based on an impairment index (i.e., 2 or more tests being >1.5 SD below the normative mean), the presence of weak cognitive performance was evident in as many as 45.4% of the sample. Two-thirds of the sample also showed abnormally large intraindividual variability in cognitive functioning (i.e., significant WISC-IV index discrepancies). The findings highlight the need to look beyond group averages on neuropsychological testing. Utilizing an impairment index and considering intraindividual performance variability conveyed deficits that may warrant clinical follow-up. The association of brain injury symptoms with quality of life but not injury severity emphasizes the need to consider symptoms after TBI within a biopsychosocial framework. Clinical Trial Registration: ClinicalTrials.gov; identifier: NCT02210221.

Frequency of fatigue and its changes in the first 6 months after traumatic brain injury: results from the CENTER-TBI study.

BACKGROUND: Fatigue is one of the most commonly reported subjective symptoms following traumatic brain injury (TBI). The aims were to assess frequency of fatigue over the first 6 months after TBI, and examine whether fatigue changes could be predicted by demographic characteristics, injury severity and comorbidities. METHODS: Patients with acute TBI admitted to 65 trauma centers were enrolled in the study Collaborative European NeuroTrauma Effectiveness Research in TBI (CENTER-TBI). Subjective fatigue was measured by single item on the Rivermead Post-Concussion Symptoms Questionnaire (RPQ), administered at baseline, three and 6 months postinjury. Patients were categorized by clinical care pathway: admitted to an emergency room (ER), a ward (ADM) or an intensive care unit (ICU). Injury severity, preinjury somatic- and psychiatric conditions, depressive and sleep problems were registered at baseline. For prediction of fatigue changes, descriptive statistics and mixed effect logistic regression analysis are reported. RESULTS: Fatigue was experienced by 47% of patients at baseline, 48% at 3 months and 46% at 6 months. Patients admitted to ICU had a higher probability of experiencing fatigue than those in ER and ADM strata. Females and individuals with lower age, higher education, more severe intracranial injury, preinjury somatic and psychiatric conditions, sleep disturbance and feeling depressed postinjury had a higher probability of fatigue. CONCLUSION: A high and stable frequency of fatigue was found during the first 6 months after TBI. Specific socio-demographic factors, comorbidities and injury severity characteristics were predictors of fatigue in this study.

'Insane criminals' and the 'criminally insane': criminal asylums in Norway, 1895-1940.

This article looks into the establishment and development of two criminal asylums in Norway. Influenced by international psychiatry and a European reorientation of penal law, the country chose to institutionalize insane criminals and criminally insane in separate asylums. Norway's first criminal asylum was opened in 1895, and a second in 1923, both in Trondheim. Both asylums quickly filled up with patients who often stayed for many years, and some for their entire lives. The official aim of these asylums was to confine and treat dangerous and disruptive lunatics. Goffman postulates that total institutions typically fall short of their official aims. This study examines records of the patients who were admitted to the two Trondheim asylums, in order to see if the official aims were achieved.

Unexpected myopathy associated with a mutation in MYBPC3 and misplacement of the cardiac myosin binding protein C.

BACKGROUND: Myosin binding protein C (MyBPC) is essential for the structure of the sarcomeres in striated muscle. There is one cardiac specific isoform and two skeletal muscle specific isoforms. Mutations in MYBPC3 encoding the cardiac isoform cause cardiomyopathy. METHODS AND RESULTS: We have identified an infant with fatal cardiomyopathy due to a homozygous mutation, p.R943X, in MYBPC3. The patient also had an unexpected skeletal myopathy. The patient expressed the cardiac specific MyBPC isoform in skeletal muscle at transcript and protein levels. Numerous muscle fibres expressing the mutant cardiac isoform showed structural abnormalities with disorganisation of sarcomeres and depletion of myosin thick filaments. CONCLUSIONS: The surprising identification of a skeletal myopathy in this patient was due to aberrant expression of mutant cardiac MyBPC in skeletal muscle.