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.

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.

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.

Feasibility and Acceptability of a Complex Telerehabilitation Intervention for Pediatric Acquired Brain Injury: The Child in Context Intervention (CICI).

The current study is a feasibility study of a randomized controlled trial (RCT): the Child in Context Intervention (CICI). The CICI study is an individualized, goal-oriented and home-based intervention conducted mainly through videoconference. It targets children with ongoing challenges (physical, cognitive, behavioral, social and/or psychological) after acquired brain injury (ABI) and their families at least one year post injury. The CICI feasibility study included six children aged 11-16 years with verified ABI-diagnosis, their families and their schools. The aim was to evaluate the feasibility of the intervention components, child and parent perceptions of usefulness and relevance of the intervention as well as the assessment protocol through a priori defined criteria. Overall, the families and therapists rated the intervention as feasible and acceptable, including the videoconference treatment delivery. However, the burden of assessment was too high. The SMART-goal approach was rated as useful, and goal attainment was high. The parents' ratings of acceptability of the intervention were somewhat higher than the children's. In conclusion, the CICI protocol proved feasible and acceptable to families, schools and therapists. The assessment burden was reduced, and adjustments in primary outcomes were made for the definitive RCT.

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.

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.