Validity of the Norwegian Version of the Needs and Provision Complexity Scale (NPCS) in Patients with Traumatic Brain Injury and Atraumatic Subarachnoid Hemorrhage.

There is a lack of validated measures in Scandinavian languages to track healthcare service needs and delivery for patients with neurological disabilities. The aim of the present study was to validate the Norwegian version of the clinician and patient Needs and Provision Complexity Scale (NPCS) Needs and Gets. Data on the NPCS from 60 adult patients with traumatic brain injury or atraumatic subarachnoid hemorrhage and symptoms lasting >5 months were assessed for inter-rater/test-retest reliability and agreement, as well as concurrent validity with the Neurological Impairment Scale (NIS), the Functional Independence Measure (FIM), and the Community Integration Questionnaire (CIQ). The clinician NPCS showed good-excellent inter-rater reliability, and the patient NPCS demonstrated good-excellent test-retest reliability. Absolute agreement was moderate-excellent across all clinician and patient items. Concurrent validity was significant, with large correlations between clinician NPCS-Needs and the NIS and FIM total scores, and small-medium correlations between the clinician and patient NPCS-Gets and the NIS and FIM total scores. There were no significant correlations between the NPCS and the CIQ. The study findings support the use of the Norwegian version of the NPCS to assess met and unmet healthcare and support needs for Norwegian-speaking adults with neurological disabilities.

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.

Participation in the Chronic Phase after Traumatic Brain Injury: Variations and Key Predictors.

Participation is of major importance for individuals with traumatic brain injury (TBI). This study evaluates participation over a period of one year among persons with TBI in the chronic phase and explores sociodemographic, psychological, and environmental predictors of levels and trajectories of participation. One hundred and twenty home-living survivors of TBI with persistent injury-related consequences at least two years post-injury who participated in a goal-oriented randomized trial were assessed at baseline and after four and twelve months. Linear mixed-effects model analysis was applied to evaluate height, trajectory slope, and predictors of the Participation Assessment with the Recombined Tools-Objective (PART-O) total score and the subscales Productivity, Social Relations, and Being Out and About. Being married, having a higher education, and having good global functioning predicted more frequent participation. Education, executive- and global functions predicted Productivity, while age and being married predicted Social Relations. Participating in the study during the COVID-19 pandemic had a negative impact on Productivity. Participation was relatively stable over 12 months, with a slight decline, but may be influenced by demographic factors and functional consequences. Rehabilitation services should particularly focus on people with TBI living alone with lower levels of global and executive function.

Effect of an Individually Tailored and Home-Based Intervention in the Chronic Phase of Traumatic Brain Injury: A Randomized Clinical Trial.

Importance: Traumatic brain injury (TBI) can cause long-lasting and heterogeneous difficulties that require an individually tailored approach to rehabilitation. However, high-quality studies of treatment options in the chronic phase of TBI are lacking. Objective: To evaluate the effect of a home-based, individualized, and goal-oriented rehabilitation intervention in the chronic phase of TBI. Design, Setting, and Participants: This study was an intention-to-treat parallel-group assessor-blinded randomized clinical trial with 1:1 randomization to an intervention or control group. Participants included adults in southeastern Norway who had sustained a TBI more than 2 years earlier, lived at home, and had ongoing TBI-related difficulties. A population-based sample of 555 individuals were invited, and 120 were included. Participants were assessed at baseline, 4 months, and 12 months after inclusion. Specialized rehabilitation therapists provided the intervention in patients' homes or via video conference and telephone. Data collection was conducted between June 5, 2018, and December 14, 2021. Interventions: The intervention group received an 8-session individually tailored and goal-oriented rehabilitation program over 4 months. The control group received usual care in their municipality. Main Outcomes and Measures: Preestablished primary outcomes were disease-specific health-related quality of life (HRQOL; measured by the Quality of Life After Brain Injury [QOLIBRI] overall scale) and social participation (measured by the Participation Assessment With Recombined Tools-Objective [PART-O] social subscale). Preestablished secondary outcomes included generic HRQOL (measured by the EuroQol 5-dimension 5-level [EQ-5D-5L] questionnaire), difficulty with TBI-related problem management (target outcomes; mean severity calculated across 3 main self-identified problem areas that were individually measured using a 4-point Likert scale), TBI symptoms (measured by the Rivermead Post Concussion Symptoms Questionnaire [RPQ]), psychological distress (depression and anxiety; measured by the Patient Health Questionnaire 9-item scale and the Generalized Anxiety Disorder 7-item scale [GAD-7], respectively), and functional competency (measured by the Patient Competency Rating Scale). Results: Among 120 participants in the chronic phase of TBI, the median (IQR) age was 47.5 (31.0-55.8) years, and the median (IQR) time since injury was 4 (3-6) years; 85 (70.8%) were male. A total of 60 participants were randomized to the intervention group, and 60 were randomized to the control group. Between baseline and 12 months, no significant between-group effects were found for the primary outcomes of disease-specific HRQOL (QOLIBRI overall scale score: 2.82; 97.5% CI, -3.23 to 8.88; P = .30) or social participation (PART-O social subscale score: 0.12; 97.5% CI, -0.14 to 0.38; P = .29). At 12 months, the intervention group (n = 57) had significantly higher generic HRQOL (EQ-5D-5L score: 0.05; 95% CI, 0.002-0.10; P = .04) and fewer symptoms of TBI (RPQ total score: -3.54; 95% CI, -6.94 to -0.14; P = .04) and anxiety (GAD-7 score: -1.39; 95% CI, -2.60 to -0.19; P = .02) compared with the control group (n = 55). At 4 months only, the intervention group (n = 59) had significantly less difficulty managing TBI-related problems (target outcomes mean severity score: -0.46, 95% CI, -0.76 to -0.15; P = .003) compared with the control group (n = 59). No adverse events were reported. Conclusions and Relevance: In this study, no significant results were observed for the primary outcomes of disease-specific HRQOL or social participation. However, the intervention group reported improvements in secondary outcomes (generic HRQOL and symptoms of TBI and anxiety) that were maintained at 12-month follow-up. These findings suggest that rehabilitation interventions could help patients even in the chronic phase of TBI. Trial Registration: ClinicalTrials.gov Identifier: NCT03545594.

Goal Attainment in an Individually Tailored and Home-Based Intervention in the Chronic Phase after Traumatic Brain Injury.

Traumatic brain injury (TBI) is a heterogeneous condition with long-term consequences for individuals and families. Goal-oriented rehabilitation is often applied, but there is scarce knowledge regarding types of goals and goal attainment. This study describes goal attainment in persons in the chronic phase of TBI who have received an individualized, SMART goal-oriented and home-based intervention, compares goal attainment in different functional domains, and examines indicators of goal attainment. Goal attainment scaling (GAS) was recorded in the intervention group (n = 59) at the final session. The goal attainment was high, with 93.3% increased goal attainment across all goals at the final session. The level of goal attainment was comparable across domains (cognitive, physical/somatic, emotional, social). Gender, anxiety symptoms, self-reported executive dysfunction, and therapy expectations were indicators of goal attainment. These results indicate a potential for the high level of goal attainment in the chronic phase of TBI. Tailoring of rehabilitation to address individual needs for home-dwelling persons with TBI in the chronic phase represents an important area of future research.

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.

Patient-Reported Problem Areas in Chronic Traumatic Brain Injury.

OBJECTIVE: The aims of this study were to (1) assess self-reported main problem areas reported by patients with traumatic brain injury (TBI) and their family members in the chronic phase, and (2) compare the self-prioritized problems with difficulties captured by questionnaires and neuropsychological screening through linking to the International Classification of Functioning, Disability and Health (ICF). SETTING: Outpatient clinic at the Oslo University Hospital, Norway. PARTICIPANTS: In total, 120 patients with TBI were recruited, of whom, 78 had a participating family member. Eligibility criteria were a clinical TBI diagnosis with verified intracranial injury, living at home, aged 18 to 72 years, 2 years or more postinjury, and experiencing perceived TBI-related difficulties, reduced physical and mental health, or difficulties with participation in everyday life. Patients with severe psychiatric or neurological disorders or inability to participate in goal-setting processes were excluded. DESIGN: Cross-sectional. MAIN MEASURES: Target Outcomes, that is, 3 main TBI-related problem areas reported by patients and family members, collected in a semistructured interview; standardized questionnaires of TBI-related symptoms, anxiety, depression, functioning, and health-related quality of life; neuropsychological screening battery. RESULTS: Target Outcomes were related to cognitive, physical, emotional, and social difficulties. Target Outcomes were linked to 12 chapters and 112 distinct categories in the ICF, while standardized measures only covered 10 chapters and 28 categories. Some aspects of post-TBI adjustment were found to be insufficiently covered by the ICF classification, such as identity issues, lack of meaningful activities, and feeling lonely. CONCLUSION: The Target Outcomes approach is a useful assessment method in a population with chronic TBI. The standardized questionnaires capture the spectrum of problems, whereas the Target Outcomes approach captures the prioritized individual problems hindering everyday life after TBI. While the standardized measures are an irreplaceable part of the assessment, Target Outcomes ensures patient involvement and may help clinicians better tailor relevant rehabilitation efforts.

Assessment of Nociception and Pain in Participants in an Unresponsive or Minimally Conscious State After Acquired Brain Injury: The Relation Between the Coma Recovery Scale-Revised and the Nociception Coma Scale-Revised.

OBJECTIVES: To investigate the relation between consciousness and nociceptive responsiveness (ie, Nociception Coma Scale-Revised [NCS-R]), to examine the suitability of the NCS-R for assessing nociception in participants with disorders of consciousness (DOC), and to replicate previous findings on psychometric properties of the scale. DESIGN: Specialized DOC program. SETTING: Specialized DOC program and university hospitals. PARTICIPANTS: Participants (N=85) diagnosed with DOC. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: We prospectively assessed consciousness with the Coma Recovery Scale-Revised (CRS-R). Responses during baseline, non-noxious, and noxious stimulations were scored with the NCS-R and CRS-R oromotor and motor subscales. RESULTS: CRS-R total scores correlated with NCS-R total scores and subscores. CRS-R motor subscores correlated with NCS-R total scores and motor subscores, and CRS-R oromotor subscores correlated with NCS-R total scores as well as verbal and facial expression subscores. There was a difference between unresponsive wakefulness syndrome and minimally conscious state in the proportion of grimacing and/or crying participants during noxious conditions. We replicated previous findings on psychometric properties of the scale but found a different score as the best threshold for nociception. CONCLUSIONS: We report a strong relation between the responsiveness to nociception and the level of consciousness. The NCS-R seems to be a valuable tool for assessing nociception in an efficient manner, but additional studies are needed to allow recommendations for clinical assessment of subjective pain experience.

Cognitive Event-Related Potentials during the Sub-Acute Phase of Severe Traumatic Brain Injury and Their Relationship to Outcome.

Predicting outcome in the early phase after severe traumatic brain injury (sTBI) is a major clinical challenge, particularly identifying patients with potential for good cognitive outcome. The current single-center prospective study aimed to explore presence and normalization of electroencephalography (EEG)-based event-related potentials (ERPs) in the early phase followings TBI, and their relationship to functional and cognitive outcome 6 months post-injury. Fourteen adult patients (eight males) with sTBI were recruited from the neurointensive care unit (mean age = 38.2 years [standard deviation (SD) = 14.7]; mean lowest Glasgow Coma Scale (GCS) score within first 24 h = 5.4, SD = 1.87). EEG recordings were conducted biweekly at three time-points applying an ERP paradigm encompassing a passive condition involving hearing their own name randomly interspersed between an unfamiliar name (UN), and an active condition with instruction to count their own name. Functional and cognitive outcome 6 months post-injury was measured with Glasgow Outcome Scale-Extended (GOSE) and neuropsychological tests of attention and memory. Ten patients demonstrated a significantly enhanced cognitive P3 in the active counting task compared with passive listening across recordings, and six presented with normalization of P3 in the counting task. Moreover, P3 amplitude to the counting task at the third time-point was positively correlated with both functional outcome (GOSE) and cognition (verbal learning, attentional set-shifting, and switching) 6 months post-injury. ERP can index cognitive capacities in the early phase following sTBI, and the cognitive P3 component in an active design is associated with functional and cognitive outcome, demonstrating that the cognitive P3 may yield valuable information of residual cognition and provide supplementary prognostic information.

Neurophysiological Indicators of Residual Cognitive Capacity in the Minimally Conscious State.

BACKGROUND: The diagnostic usefulness of electrophysiological methods in assessing disorders of consciousness (DoC) remains to be established on an individual patient level, and there is need to determine what constitutes robust experimental paradigm to elicit electrophysiological indices of covert cognitive capacity. OBJECTIVES: Two tasks encompassing active and passive conditions were explored in an event-related potentials (ERP) study. The task robustness was studied in healthy controls, and their utility to detect covert signs of command-following on an individual patient level was investigated in patients in a minimally conscious state (MCS). METHODS: Twenty healthy controls and 20 MCS patients participated. The active tasks included (1) listening for a change of pitch in the subject's own name (SON) and (2) counting SON, both contrasted to passive conditions. Midline ERPs are reported. RESULTS: A larger P3 response was detected in the counting task compared to active listening to pitch change in the healthy controls. On an individual level, the counting task revealed a higher rate of responders among both healthy subjects and MCS patients. CONCLUSION: ERP paradigms involving actively counting SON represent a robust paradigm in probing for volitional cognition in minimally conscious patients and add important diagnostic information in some patients.

Rate of disorders of consciousness in a prospective population-based study of adults with traumatic brain injury.

OBJECTIVE: Establish rate of disorders of consciousness (DOC) and course of recovery in adults who have sustained severe traumatic brain injury (sTBI). SETTING: Four Norwegian neurosurgical departments. PARTICIPANTS: Vegetative or minimally conscious patients. DESIGN: Prospective, longitudinal population-based study of adults with sTBI with follow-ups at 3, 12, and 24-36 months postinjury. MAIN MEASURES: Coma Recovery Scale-Revised, Glasgow Coma Scale, Extended Glasgow Outcome Scale, and Disability Rating Scale. RESULTS: Three months postinjury, 2% of the sTBI population remained in a vegetative or minimally conscious state, reduced by the half after 1 year, corresponding to average annual age-adjusted incidence rates of DOC of 0.09 per 100 000 3 months post-sTBI. At 3 and 12 months, the incidence was 0.06 and 0.01 per 100 000 for the vegetative state and 0.03 and 0.04 per 100 000 for the minimally conscious state. Diagnostic categorization was stable between 12 and 24-36 months, although clinically relevant improvements were observed in minimally conscious patients. CONCLUSION: The data suggest that prolonged DOC is rare following sTBI in Norway, contrary to the commonly held belief that improvements in intensive care treatment have resulted in an increased incidence of DOC. Prolonged DOC was associated with severity of injury, subcortical lesions, and diffuse axonal injury.