Cognitive and everyday functioning after bacterial brain abscess: a prospective study of functional recovery from 8 weeks to 1 year post-treatment.

OBJECTIVE: A bacterial brain abscess may damage surrounding brain tissue by mass effect, inflammatory processes, and bacterial toxins. The aim of this study was to examine cognitive and functional outcomes at 8 weeks and 1 year following acute treatment. METHODS: Prospective study of 20 patients with bacterial brain abscess (aged 17-73 years; 45% females) with neuropsychological assessment at 8 weeks and 1 year post-treatment. Behavior Rating Inventory of Executive Function-Adult Version (BRIEF-A) and Patient Competence Rating Scale (PCRS) were used to assess everyday functioning and administered to patients and informants. RESULTS: Cognitive impairment was found in 30% of patients at 8 weeks and 22% at 1 year. Significant improvements were seen on tests of perceptual reasoning, attention, verbal fluency, and motor abilities (p < 0.05). At 1 year, 45% had returned to full-time employment. Nevertheless, patients and their informants obtained scores within the normal range on measures of everyday functioning (PCRS and BRIEF-A) at 8 weeks and 1 year. No significant improvements on these measures emerged over time. CONCLUSION: Residual long-term cognitive impairment and diminished work ability affected 22% and 45% of patients one year after BA. Persistent cognitive impairment emphasizes the importance of prompt acute treatment and cognitive rehabilitation.

ß-Amyloid may accumulate in the human brain after focal bacterial infection: An 18 F-flutemetamol positron emission tomography study.

BACKGROUND AND PURPOSE: ß-Amyloid formation has been suggested to form part of the brain's response to bacterial infection. This hypothesis has been based on experimental animal studies and autopsy studies in humans. We asked if ß-amyloid accumulates locally around a bacterial brain abscess in living human patients. Furthermore, because brain abscess patients may suffer from chronic cognitive symptoms after abscess treatment, we also asked if a brain abscess precipitates accumulation of ß-amyloid in the neocortex in a manner that could explain abscess-related cognitive complaints. METHODS: In a prospective study, we investigated 17 brain abscess patients (age 24-72 years) with 18 F-flutemetamol positron emission tomography on one occasion 1 to 10 months after brain abscess treatment to visualize ß-amyloid accumulation. RESULTS: 18 F-flutemetamol uptake was reduced in the edematous brain tissue that surrounded the abscess remains. On this background of reduced 18 F-flutemetamol signal, three out of 17 patients showed a distinctly increased 18 F-flutemetamol uptake in the tissue immediately surrounding the abscess remains, suggesting accumulation of ß-amyloid. These three patients underwent 18 F-flutemetamol positron emission tomography significantly earlier after neurosurgical treatment (p = 0.042), and they had larger abscesses (p = 0.027) than the rest of the patients. All 17 patients suffered from mental fatigue or some subjective cognitive symptom, such as attention difficulties or memory problems, but in none of the patients was there an increase in neocortical 18 F-flutemetamol signal. CONCLUSIONS: ß-Amyloid may accumulate locally around the abscess remains in some patients with a brain abscess.

Trajectory of 10-Year Neurocognitive Functioning After Moderate-Severe Traumatic Brain Injury: Early Associations and Clinical Application.

OBJECTIVE: This study aimed to explore the 10-year trajectories of neurocognitive domains after moderate-severe traumatic brain injury (TBI), to identify factors related to long-term neurocognitive functioning, and to investigate whether performance remained stable or changed over time. METHOD: Seventy-nine patients with moderate-severe TBI between the ages of 16 and 55 years were assessed at 3 months, 1, 5, and 10 years postinjury using neuropsychological tests and functional outcomes. Three hierarchical linear models were used to investigate the relationships of domain-specific neurocognitive trajectories (Memory, Executive function, and Reasoning) with injury severity, demographics, functional outcome at 3 months (Glasgow Outcome Scale-Extended) and emotional distress at 1 year (Symptom Checklist 90-Revised). RESULTS: Education, injury severity measures, functional outcome, and emotional distress were significantly associated with both Memory and Executive function. Education and emotional distress were related to Reasoning. The interaction effects between time and these predictors in predicting neurocognitive trajectories were nonsignificant. Among patients with data at 1 and 10 year follow-ups (n = 47), 94-96% exhibited stable scores on Executive function and Reasoning tasks, and 83% demonstrated stable scores on Memory tasks. Significant memory decline was presented in 11% of patients. CONCLUSIONS: The findings highlight the differential contribution of variables in their relationships with long-term neurocognitive functioning after moderate-severe TBI. Injury severity was important for Memory outcomes, whereas emotional distress influenced all neurocognitive domains. Reasoning (intellectual) abilities were relatively robust after TBI. While the majority of patients appeared to be cognitively stable beyond the first year, a small subset demonstrated a significant memory decline over time.

Family needs at one and two years after severe traumatic brain injury: a prospective study of changes and predictors.

Objective: To assess changes in family needs between the first and second years after severe traumatic brain injury (sTBI) and to identify factors predicting unmet family needs.Design: Prospective Norwegian multicenter cohort study.Participants: The family members of 110 patients with sTBI were followed up at one year, and family members of 70 patients also at two years after trauma.Main measure: The Family Needs Questionnaire-Revised (FNQ-R).Results: Mean ratings of met family needs changed with a small decline between one year and two years post-injury on the FNQ-R subscales of Health Information and of Community Support Network. Proportions of needs met at one and two years ranged between 28% and 55%. Family needs most often met were from the Health Information subscale, and needs most often unmet were from the Emotional Support subscale. Caring for older patients, patients with more functional disabilities, female patients and being a spouse of a patient were associated with statistically significantly greater unmet family needs.Conclusion: Family members of survivors of traumatic brain injuries experience high levels of unmet needs, and rating of met needs tends to decline from one to two years post-injury. The identified predictors of unmet needs can contribute to guiding services following sTBI.

Trajectories of self-reported competency up to 10 years following moderate-to-severe traumatic brain injury.

Objectives: To describe trajectories of self-reported functional competency up to 10 years following traumatic brain injury (TBI) and identify their predictors from baseline socio-demographic and injury severity characteristics.Design and methods: Data from 94 participants from a longitudinal cohort of patients with moderate-to-severe TBI were analyzed. Socio-demographic and injury severity data were recorded at baseline. Participants completed the Patient Competency Rating Scale (PCRS) at 1, 2, 5, and 10 years. Hierarchical linear modeling was used to examine PCRS trajectories over time and assess baseline predictors.Results: There was no significant change in average PCRS scores across the follow-up time points in the full sample. Emotional and cognitive competencies had the lowest mean scores. Gender, employment, and the interaction term between gender and time were significant predictors of PCRS trajectories. Females and those who were unemployed at the time of injury showed lower trajectories of self-reported competency.Conclusion: Self-reported competency remained stable from one-year post-injury for men only. Lower mean scores in the domains of emotional and cognitive competencies suggest a need for continued rehabilitation focus in the chronic phase after TBI. Special attention to women and individuals who are unemployed at the time of injury may be warranted.

Return to work after severe traumatic brain injury: a national study with a one-year follow-up of neurocognitive and behavioural outcomes.

The objectives were to investigate the frequency of return-to-work (RTW) one year after severe traumatic brain injury (sTBI: Glasgow Coma Scale, GCS 3-8) and to identify which demographic and injury-related characteristics and neurocognitive factors are associated with RTW. This study is part of a prospective national study on sTBI conducted in all four Norwegian Trauma Referral Centres, including patients aged >15 years over a period of three years (n = 378). For the purpose of this study, only pre-employed individuals of working age (16 to 67 years) were investigated for RTW (n = 143), and of these, 104 participants underwent neuropsychological testing. Measures of acute injury severity, neuropsychological composite scores (Memory, Processing Speed, Executive Functions) at the one-year follow-up, and the Behaviour Rating Inventory of Executive Functions (patient- and relative reports) were explored as predictors of RTW. The frequency of RTW was 54.5%. Multivariate logistic regression analyses identified younger age, shorter length of stay in intensive care, better Processing Speed scores, and lower levels of metacognitive difficulties as rated by relatives as significant predictors of RTW. Findings support the importance of neuropsychological measures in predicting long-term RTW and highlight the need to address neurocognitive and behavioural difficulties to improve RTW after sTBI.

Improvement and Prediction of Memory and Executive Functions in Patients Admitted to a Neurosurgery Service With Complicated and Uncomplicated Mild Traumatic Brain Injury.

OBJECTIVES: To compare neuropsychological performances between patients with and without intracranial abnormalities after mild traumatic brain injury (mTBI) and assess the relationship between demographics, injury severity, and self-reported symptom characteristics with improvements in memory and executive functions (8 weeks to 1 year postinjury). SETTING: Inpatient/outpatient followed up at the Department of Physical Medicine and Rehabilitation, Oslo, Norway. PARTICIPANTS: Patients were divided into groups of complicated (n = 73) or uncomplicated mTBIs (n = 77) based on intracranial findings on computed tomographic or magnetic resonance imaging brain scans. DESIGN: Prospective, longitudinal cohort study. MAIN MEASURES: Neuropsychological assessments of memory and executive functions, self-reports of postconcussion, depression, posttraumatic stress symptoms, and general functioning at 8 weeks and 1 year postinjury. RESULTS: Longitudinal data showed that patients with complicated and uncomplicated mTBIs had similar cognitive performance and improvements. Hierarchical linear modeling revealed that individuals with early posttraumatic stress disorder and/or depressive symptoms performed worse on measures of Memory functions, and those with younger age (<40 years) and lower education (<12 years) performed worse on measures of Executive functions. CONCLUSION: Findings are suggestive of a good cognitive outcome following complicated and uncomplicated mTBIs. Early assessments of posttraumatic stress disorder and depression seem useful in identifying those most vulnerable having poorer cognitive outcomes, providing further interventions that may affect emotional and cognitive recovery.

Family members' experience with in-hospital health care after severe traumatic brain injury: a national multicentre study.

BACKGROUND: Family member's experience and satisfaction of health care in the acute care and in-patient rehabilitation are important indicators of the quality of health care services provided to patients with severe traumatic brain injury (TBI). The objective was to assess family members' experience of the health care provided in-hospital to patients with severe TBI, to relate experiences to family member and patient demographics, patients' function and rehabilitation pathways. METHODS: Prospective national multicentre study of 122 family members of patients with severe TBI. The family experience of care questionnaire in severe traumatic brain injury (FECQ-TBI) was applied. Independent sample t-tests or analysis of variance (ANOVA) were used to compare the means between 2 or more groups. Paired samples t-tests were used to investigate differences between experience in the acute and rehabilitation phases. RESULTS: Best family members` experience were found regarding information during the acute phase, poorest scores were related to discharge. A significantly better care experience was reported in the acute phase compared with the rehabilitation phase (p < 0.05). Worst family members` experience was related to information about consequences of the injury. Patient's dependency level (p < 0.05) and transferral to non-specialized rehabilitation were related to a worse family members` experience (p < 0.01). CONCLUSIONS: This study underscores the need of better information to family members of patients with severe TBI in the rehabilitation as well as the discharge phase. The results may be important to improve the services provided to family members and individuals with severe TBI.

The trajectories of overall disability in the first 5 years after moderate and severe traumatic brain injury.

PRIMARY OBJECTIVES: To assess longitudinal trajectories of overall disability after moderate-to-severe traumatic brain injury (TBI) and to examine whether those trajectories could be predicted by socio-demographic and injury characteristics. METHODS: Demographics and injury characteristics of 105 individuals with moderate-to-severe TBI were extracted from medical records. At the 1-, 2-, and 5-year follow-ups, TBI-related disability was assessed by the GOSE. A hierarchical linear model (HLM) was used to examine functional outcomes up to 5 years following injury and whether those outcomes could be predicted by: time, gender, age, relationship, education, employment pre-injury, occupation, GCS, cause of injury, length of post-traumatic amnesia (PTA), CT findings and injury severity score, as well as the interactions between each of these predictors and time. RESULTS: Higher GOSE trajectories (lower disability) were predicted by younger age at injury and shorter PTA, as well as by the interaction terms of time*PTA and time*employment. Those who had been employed at injury decreased in disability over time, while those who had been unemployed increased in disability. CONCLUSION: The study results support the view that individual factors generally outweigh injury-related factors as predictors of disability after TBI, except for PTA.

Factors Affecting Caregiver Burden 1 Year After Severe Traumatic Brain Injury: A Prospective Nationwide Multicenter Study.

OBJECTIVES: To assess burden in the caregivers of patients with severe traumatic brain injury (TBI) 1 year postinjury, related to caregiver's demographic data and social network, patient's demographic data, injury severity, and functional status. DESIGN: Prospective national multicenter study. Self-report from caregivers, patient data collected from the national cohort on patients with severe TBI. PARTICIPANTS: 92 caregivers. MAIN OUTCOME MEASURE: The Caregiver Burden Scale (CBS). RESULTS: Total caregiver burden was reported high in 16% of caregivers and moderate in 34%. The mean total burden index was 2.12, indicating a moderate burden. Caregivers reported highest scores on the General strain index, followed by the Disappointment index. Poor social network, feeling loneliness, and caring for patients with severe disability were significant predictors of higher burden in univariate analyses (P < .01). Multiple linear regression analyses showed that experiencing loneliness and caring for a patient with more severe disability were independent predictors for higher caregiver burden for all CBS indices. Marital status (married) and low frequency of meeting friends were significant results in some indices. CONCLUSIONS: Lack of a social network, feeling loneliness, and patient's functional status are predictors of caregiver burden. General strain, disappointment, and isolation were identified as areas in which caregiver burden is high.

Functional Recovery and Life Satisfaction in the First Year After Severe Traumatic Brain Injury: A Prospective Multicenter Study of a Norwegian National Cohort.

OBJECTIVES: (1) To examine the impact of demographic and acute injury-related variables on functional recovery and life satisfaction after severe traumatic brain injury (sTBI) and (2) to test whether postinjury functioning, postconcussive symptoms, emotional state, and functional improvement are related to life satisfaction. DESIGN: Prospective national multicenter study. SETTING: Level 1 trauma centers in Norway. PARTICIPANTS: 163 adults with sTBI. MAIN MEASURES: Functional recovery between 3 and 12 months postinjury measured with Glasgow Outcome Scale Extended, Rivermead Postconcussion Symptoms Questionnaire, Hospital Anxiety and Depression Scale, and satisfaction with life situation. RESULTS: 60% of cases experienced functional improvement from 3 to 12 months postinjury. Multivariate logistic regression analysis revealed that discharge to a rehabilitation department from acute care (odds ratio [OR] = 2.14; P < .05) and fewer days with artificial ventilation (OR = 1.04; P < .05) were significantly related to improvement. At 12 months postinjury, 85% were independent in daily activities. Most participants (63%) were satisfied with their life situation. Regression analysis revealed that older age (>65 years), low education, better functional outcome, and the absence of depressive and postconcussion symptoms were significant (P < .05) predictors of life satisfaction. Functional improvement was significantly associated with emotional state but not to life satisfaction. CONCLUSION: Following sTBI, approximately two-thirds of survivors improve between 3 and 12 months postinjury and are satisfied with their life. Direct discharge from acute care to specialized rehabilitation appears to increase functional recovery.

Neuropsychological functioning in a national cohort of severe traumatic brain injury: demographic and acute injury-related predictors.

OBJECTIVES: To determine the rates of cognitive impairment 1 year after severe traumatic brain injury (TBI) and to examine the influence of demographic, injury severity, rehabilitation, and subacute functional outcomes on cognitive outcomes 1 year after severe TBI. SETTING: National multicenter cohort study over 2 years. PARTICIPANTS: Patients (N = 105), aged 16 years or older, with Glasgow Coma Scale score of 3 to 8 and Galveston Orientation and Amnesia Test score of more than 75. MAIN MEASURES: Neuropsychological tests representing cognitive domains of Executive Functions, Processing Speed, and Memory. Injury severity included Rotterdam computed tomography score, Glasgow Coma Scale score, and posttraumatic amnesia (PTA) duration, together with length of rehabilitation and Glasgow Outcome Scale-Extended score. RESULTS: In total, 67% of patients with severe TBI had cognitive impairment. Executive Functions, Processing Speed, and Memory were impaired in 41%, 58%, and 57% of patients, respectively. Using multiple regression analysis, Processing Speed was significantly related to PTA duration, Glasgow Outcome Scale-Extended score, and length of inpatient rehabilitation (R = 0.30); Memory was significantly related to Glasgow Outcome Scale-Extended score (R = 0.15); and Executive Functions to PTA duration (R = 0.10). Rotterdam computed tomography and Glasgow Coma Scale scores were not associated with cognitive functioning at 1 year postinjury. CONCLUSION: Findings highlight cognitive consequences of severe TBI, with nearly two-thirds of patients showing cognitive impairments in at least 1 of 3 cognitive domains. Regarding injury severity predictors, only PTA duration was related to cognitive functioning.

Multi-level modelling of employment probability trajectories and employment stability at 1, 2 and 5 years after traumatic brain injury.

PRIMARY OBJECTIVES: To examine trajectories of employment probability and stability over the first 5 years after traumatic brain injury (TBI) by using multi-level modelling and multinomial logistic regressions. RESEARCH DESIGN: A longitudinal cohort study. METHODS AND PROCEDURES: One hundred and five individuals with moderate-to-severe TBI who had been admitted to the Trauma Referral Centre for the Southeast region of Norway were followed up at 1, 2 and 5 years after the injury. MAIN OUTCOMES AND RESULTS: Employment status was dichotomized into employed and unemployed, while employment stability was categorized into stably employed, unstably employed and unemployed at 1, 2 and 5 years after injury. Being single, unemployment prior to injury, blue collar occupation, lower Glasgow Coma Scale (GCS) score at hospital admission and greater length of post-traumatic amnesia (PTA) were significantly associated with being unemployed at 1, 2 and 5 years post-injury. Further, younger patients, those with a lower GCS, greater length of PTA and greater length of hospital stay were negatively associated with employment stability. CONCLUSIONS: It could be wise to target patient population with these demographic and injury characteristics for more extensive follow-ups and vocational rehabilitation to help improve employment outcomes following injury.

Relationship between physical and psychological functioning and health-related quality of life in congenital Aniridia.

PURPOSE: Congenital aniridia is a serious eye disease characterized by absence of iris to various degrees. The aims of this study were to investigate health-related quality of life (HRQoL) in adults with aniridia and assess the relationships between HRQoL, psychological status, ocular health and obesity. METHODS: Twenty-nine adults with congenital aniridia (48% male, aged 18-79 years) participated. HRQoL was measured with SF-36 and the EQ visual analogue scale (VAS). The physical (PCS) and mental (MCS) component summaries of the SF-36 were calculated with higher scores indicating better HRQoL. Symptoms of anxiety and depression were measured using the Hospital Anxiety and Depression Scale (HADS). Obesity was assessed with the Patient-Reported Outcomes in Obesity (PROS). Sociodemographic characteristics, genetic variants and ocular and medical health variables were also analysed. RESULTS: The participants scored significantly lower in the general health domain of the SF-36 than the general population (65.2 vs. 75.3, p = 0.017). The EQ VAS score was also lower in the aniridia group (64.9 vs. 77.9, p = 0.021). Low PCS score was correlated with presence of ocular pain (p = 0.019), high HADS score (p = 0.017) and high PROS score (p = 0.009). Low MCS score was related to higher educational level (p = 0.038) and high HADS score (p < 0.001). High HADS and PROS scores were both related to low EQ VAS scores. CONCLUSION: Adults with congenital aniridia scored worse on certain measures of HRQoL than the general population. Poorer HRQoL was associated with increased symptoms of anxiety, depression and obesity and with presence of ocular pain.

Understanding sexual health concerns among adolescents and young adults with differences of sex development: a qualitative study.

PURPOSE: Differences of sex development (DSD) are congenital conditions that involve variations in individuals' sex chromosomes, genes, external and/or internal genitalia, hormones, and/or secondary sex characteristics. This study sought to elucidate the experiences of adolescents and young adults living with DSD by focusing on their experiences of intimacy and sexual health. METHODS: An interpretative phenomenological research design was adopted. Semi-structured qualitative interviews were conducted with 11 Norwegian adolescents and young adults aged 16-26 years who had five different DSD conditions. The interview findings were analysed by means of a reflexive thematic analysis. RESULTS: The participants reported feeling different, both in terms of how their body functioned and how their body looked. Lack of knowledge increased this feeling of differentness. Moreover, lack of everyday language with which to talk about intimacy and sexual concerns resulted in the participants feeling stigma. Anticipating stigmatization and lacking everyday language complicated the participants' communication regarding their DSD and sexual health. CONCLUSIONS: The sexual experiences of adolescents and young adults with DSD are diverse. Fear of stigmatization and lack of everyday language complicate communication with healthcare professionals and others. Understanding their unique needs is crucial to helping individuals achieve good sexual health.

Self-reported symptoms of everyday executive dysfunction, daytime sleepiness, and fatigue and health status among adults with congenital aniridia: a descriptive study.

Background: Congenital aniridia is a rare genetic disorder of the eye characterized by visual impairment and progressive vision loss. While prior research has focused on ocular manifestations in individuals with aniridia, there is a dearth of research on impacts on cognition and mental health. The aims of this study were to describe subjective symptoms of everyday executive functioning, fatigue and sleepiness in adults with aniridia and to compare self-reported health status with that of a normative reference group. Methods: Twenty-nine adults (aged 18-79 years) with congenital aniridia were included in this online survey, of whom 52% were females. Participants completed self-report measures of executive functioning (The Behavior Rating Inventory of Executive Function-Adult Version), sleepiness, fatigue, and health status (EQ-5D-5L). Results: Participants reported relatively few problems in everyday executive functioning, with only 14% experiencing impaired executive functioning. Scores on the five EQ-5D-5L domains (mobility, self-care, usual activities, pain, and anxiety/depression) did not differ from those of the normative reference group. The frequencies of excessive daytime sleepiness and severe fatigue were 17% and 38%, respectively. Ocular pain was experienced by 62% of participants. Conclusions: The findings show that cognitive problems are related to and reflect self-reported health status and extent of fatigue. Moreover, those who suffered from ocular pain reported more difficulties with executive functioning, sleepiness and fatigue. These findings are important for understanding this disorder and supporting patients.

Community Integration and Associated Factors 10 Years after Moderate-to-Severe Traumatic Brain Injury.

This study evaluated the impact of baseline injury characteristics and one-year functional level on the 10-year community integration outcomes for working-age patients with moderate-to-severe traumatic brain injury (TBI). Patients aged 16-55 and diagnosed with moderate-to-severe TBI within 24 h of injury were eligible for the study. Multivariable hierarchical linear regression was utilized to assess the impact of baseline characteristics and one-year functional measures on the mean Community Integration Questionnaire (CIQ) scores 10 years after injury. Of 133 original study participants, 97 survived 10 years, and 75 were available for this study. The mean total CIQ score changed positively from one to 10 years post-injury, from 18.7 (±5.5) to 19.8 (±4.8) (p = 0.04). The results suggested that age (ß = -0.260, p = 0.013), FIM-Cognitive subscale (ß = 0.608, p = 0.002), and the bodily pain subscale (BP) (ß = 0.277, p = 0.017) of the SF-36 were significantly associated with the mean CIQ scores. In conclusion, this study demonstrated improved community integration from one to 10 years in a sample of working-age patients with moderate-to-severe TBI. The findings also showed that age, cognitive function, and bodily pain were significant predictors of long-term community integration, suggesting post-acute rehabilitation should focus on factors related to long-term risk and protective factors to improve long-term outcomes.

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.

Associations between disability and employment 1 year after traumatic brain injury in a working age population.

OBJECTIVE: To investigate associations between disability and employment 1 year after traumatic brain injury (TBI) using the International Classification of Functioning, Disability and Health (ICF) as a conceptual model. DESIGN AND METHODS: A prospective study including 93 patients with moderate-to-severe TBI (aged 16-55 year). Disability components of the ICF model (impairments, activity limitations and participation restrictions) and personal factors (age, gender, pre-injury employment status) were used as independent variables. The outcome measure was employment at 1 year post-injury categorized into unemployed and employed groups. RESULTS: Personal factors, impairments (brain injury severity, overall trauma severity and number of impaired body functions) and activity limitations (motor and cognitive abilities) accounted for 57% of the variance in employment outcome. Multivariate analyses showed that the probabilities of being employed 1 year post-injury were 95% lower for patients who were unemployed pre-injury (OR = 0.05), 74% lower for those with more severe brain injury (OR = 0.26) and 82% lower for those with more cognitive limitations (OR = 0.18). CONCLUSION: Rehabilitation professionals should take into account the importance of the ICF model when planning vocational rehabilitation interventions for individuals with TBI and focus on targeting modifiable aspects related to employment outcome, such as the individual's cognitive ability.

'It was Supposed to be a Secret': a study of disclosure and stigma as experienced by adults with differences of sex development.

Background: Differences of sex development (DSD) are a group of congenital conditions that involve variations in sex chromosomes, genes, external and/or internal genitalia, hormones, and secondary sex characteristics. The present study sought to highlight the everyday challenges faced by adults with DSD as well as to understand how issues such as disclosure, information sharing, and stigma affect their daily life. Method: We applied an interpretative phenomenological study design to explore the first-person perspectives. Semi-structured qualitative interviews of 15 adults aged 30-70 years living in Norway with five different DSD conditions (Turner syndrome, Klinefelter syndrome, congenital adrenal hyperplasia, Mayer-Rokitansky-Küster-Hauser syndrome and hypospadias) were analyzed using reflexive thematic analysis. Results: Living with DSD, indicated doing a balancing act between hiding and/or exposing what participants perceived differed from others bodies. Communication regarding sensitive topics proved to be important. The participants were doing invisible work to manage the balance between concealing and revealing their feeling of differentness, a work effort that was not necessarily perceivable to others but still affected everyday life of the participants. Furthermore, the participants' experiences of disclosure changed over time, as those who were diagnosed during childhood found that disclosure became easier with advancing age. However, being diagnosed as an adult seemed to increase the feeling of difference and complicate disclosure. Conclusion: Individuals with DSD should receive adequate information and have someone to practice disclosure towards, which could possibly strengthen the psychosocial aspects of living with their condition. The results emphasize the need to help individuals with DSD achieve a balance between disclosure and self-protection, overcome stigma, and determine when and how information about their DSD should be provided to others.