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1.
Brain Inj ; : 1-9, 2024 Apr 27.
Artigo em Inglês | MEDLINE | ID: mdl-38676705

RESUMO

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.

2.
Acta Ophthalmol ; 2023 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-38131258

RESUMO

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.

3.
Health Psychol Behav Med ; 11(1): 2263534, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37811316

RESUMO

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.

4.
JAMA Netw Open ; 6(5): e2310821, 2023 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-37145600

RESUMO

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.


Assuntos
Lesões Encefálicas Traumáticas , Qualidade de Vida , Adulto , Humanos , Masculino , Pessoa de Meia-Idade , Feminino , Inquéritos e Questionários , Noruega
5.
Int J Qual Stud Health Well-being ; 18(1): 2204635, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37092307

RESUMO

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.


Assuntos
Saúde Sexual , Humanos , Adulto Jovem , Adolescente , Comportamento Sexual , Parceiros Sexuais , Pessoal de Saúde , Medo , Pesquisa Qualitativa
6.
J Clin Med ; 12(2)2023 Jan 04.
Artigo em Inglês | MEDLINE | ID: mdl-36675333

RESUMO

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.

7.
Health Psychol Behav Med ; 10(1): 579-595, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35898596

RESUMO

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.

8.
Front Neurol ; 13: 735206, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35250800

RESUMO

BACKGROUND: Substantial variance exists in outcomes after mild traumatic brain injury (MTBI), and these differences are not fully explained by injury characteristics or severity. Genetic factors are likely to play a role in this variance. OBJECTIVES: The aim of this study was to examine associations between the apolipoprotein (APOE)-ε4 allele and memory measures at two months post-MTBI and to evaluate whether subjective cognitive and affective symptoms were associated with APOE-ε4 status. Based on previous research, it was hypothesized that APOE-ε4 carriers would show poorer verbal memory performance compared to APOE-ε4 non-carriers. METHODS: Neuropsychological data at two months post-injury and blood samples that could be used to assess APOE genotype were available for 134 patients with MTBI (mean age 39.2 years, 62% males, 37% APOE-ε4 carriers). All patients underwent computed tomography at hospital admission and magnetic resonance imaging four weeks post-injury. RESULTS: The APOE-ε4 + status was associated with decreased immediate memory recall (p = 0.036; ß = -0.10, 95% CI [-0.19, -0.01]). Emotional, cognitive, and everyday executive function symptoms at two months post-injury were significantly higher in APOE-ε4 carriers compared to non-carriers. CONCLUSION: The APOE-ε4+ allele has a negative effect on verbal memory and symptom burden two months after MTBI.

9.
J Clin Med ; 11(4)2022 Feb 12.
Artigo em Inglês | MEDLINE | ID: mdl-35207231

RESUMO

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.

10.
JIMD Rep ; 62(1): 56-69, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34765399

RESUMO

Health-related quality of life (HRQOL) is reduced in Fabry disease (FD) and associated with clinical disease manifestations, but few have used Fabry-specific severity scores to study how disease burden interferes with quality of life. We investigated how the Fabry DS3, consisting of four somatic domains and one patient-reported item, associates with HRQOL, while also evaluating fatigue, pain and psychological distress as possible predictors. Thirty-six adults with FD completed the Short-form Health Survey (SF-36), the hospital anxiety and depression scale (HADS), the brief pain inventory (BPI) and reported fatigue on a visual analog scale. Clinical data were collected from the last multidisciplinary hospital visit. Using correlation and hierarchical linear regression analyses, we examined associations between demographic, clinical and self-reported predictors and the SF-36 physical (PCS) and mental (MCS) component summary scores. Males scored lower than the general population in all SF-36 domains (P < .05). General health and social functioning were reduced in females. Before including self-reported symptom scores, DS3 showed associations with PCS (P = .009). Our fully adjusted model explained 66% of the variation in PCS, where education (P = .040) and fatigue (P = .002) retained significance. With HADS depression score (P = .001) as the sole significant factor, our regression model explained 56% of the variation in MCS. The DS3 score has implications for HRQOL in FD. Low education and fatigue represent major barriers to physical well-being, while depression strongly influences mental quality of life. Fatigue should be recognized as an important endpoint in future FD trials. Increased efforts to diagnose and treat affective disorders are warranted.

11.
Orphanet J Rare Dis ; 16(1): 427, 2021 10 12.
Artigo em Inglês | MEDLINE | ID: mdl-34641933

RESUMO

BACKGROUND: Fabry disease (FD) is an X-linked lysosomal storage disorder characterized by multiorgan dysfunction. Since individuals with FD usually experience progressive clinical disease manifestations, their health-related quality of life (HRQOL) is expected to change over time. However, there is limited longitudinal research examining HRQOL outcomes in individuals with FD. We aimed to: assess longitudinal outcomes in HRQOL in adults with FD; examine the physical- and mental HRQOL trajectories at the initial registration (baseline), 3-5 year, and 7-13 year follow-ups; and evaluate the possible associations of age, sex and medical complications with the physical- and mental HRQOL trajectories. METHODS: Forty-three individuals with FD (53% female) who were aged 18 to 81 years at baseline attended clinical follow-up visits between 2006 and 2020. Medical records were extracted retrospectively. Demographics and the 36-item Short-Form Health Survey (SF-36) were recorded at scheduled visits, except for the last data collection which was prospectively obtained in 2020. The physical (PCS) and mental (MCS) composite scores (SF-36) were chosen as outcome measures. RESULTS: The eight SF-36 domain scores were stable over a span of 13 years, and only physical- and social functioning domains worsened clinically over this follow-up period. Mean baseline SF-36 domain scores were all significantly lower (decreased HRQOL) in the FD sample compared with Norwegian population norms. Two hierarchical linear models were run to examine whether demographics and medical complications (measured at the last clinical visit) predicted physical and mental HRQOL trajectories. Age above 47 years (p < 0.001), male sex (p = 0.027), small fibre neuropathy (p < 0.001), renal dysfunction (p < 0.001), and cerebrovascular events (p = 0.003) were associated with lower HRQOL over time. No significant interactions were found between the time of follow up and the abovementioned predictors of HRQOL. CONCLUSIONS: Overall HRQOL trajectories remained stable between baseline, 3-5 year, and 7-13 year follow-ups, with the majority of individuals reporting decreased physical and mental HRQOL. Medical complications in combination with older age and male sex are important predictors of lower HRQOL in FD. Awareness of this relationship is valuable both for health care providers and for patients. The findings provide indicators that can guide treatment decisions to improve physical and mental HRQOL outcomes.


Assuntos
Doença de Fabry , Qualidade de Vida , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Inquéritos e Questionários
12.
J Clin Med ; 10(1)2021 Jan 05.
Artigo em Inglês | MEDLINE | ID: mdl-33466321

RESUMO

Traumatic brain injury (TBI) has a long-lasting impact on participation and health-related quality of life (HRQL). We aimed to describe the physical and mental health trajectories and to identify their predictors across the first 10 years after TBI. A prospective longitudinal cohort of 97 individuals with moderate to severe TBI (age 16-55 years) in Norway were followed up at 1, 2, 5, and 10 years post-injury. Their socio-demographic and injury characteristics were recorded at baseline; their responses to the 36-Item Short Form Health Survey (SF-36) were collected at each follow-up. The Physical (PCS) and Mental Component Summary (MCS) scores were used as the outcome measures of physical and mental health. The predictors of the trajectories were described and examined using hierarchical linear modelling. The subscale scores showed a stable or increasing trend, but only the Role Physical and Role Emotional subscales showed clinically relevant positive changes from 1 to 10 years post-injury. Longer time, male gender, employment pre-injury, and shorter length of post-traumatic amnesia were significant predictors of better physical health trajectories; longer time, male gender, and employment pre-injury were significant predictors of better mental health trajectories. At-risk individuals may be targeted to receive rehabilitation interventions to improve their long-term quality of life outcomes.

13.
Eur J Neurol ; 28(3): 877-883, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33131195

RESUMO

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.


Assuntos
Doença de Alzheimer , Infecções Bacterianas , Adulto , Idoso , Peptídeos beta-Amiloides/metabolismo , Compostos de Anilina , Benzotiazóis , Encéfalo/diagnóstico por imagem , Encéfalo/metabolismo , Humanos , Pessoa de Meia-Idade , Tomografia por Emissão de Pósitrons , Estudos Prospectivos , Adulto Jovem
14.
J Rehabil Med ; 52(3): jrm00034, 2020 Mar 18.
Artigo em Inglês | MEDLINE | ID: mdl-32179933

RESUMO

OBJECTIVES: To examine the probabilities and baseline predictors of the use of physical therapy, occupational therapy and speech therapy over a period of 10 years after traumatic brain injury. DESIGN: Longitudinal prospective follow-up at 1, 2, 5 and 10 years after traumatic brain injury. PARTICIPANTS: A total of 97 patients with moderate-to-severe traumatic brain injury recruited from Oslo University Hospital, Norway, during acute hospital admission in 2005-2007. METHODS: Socio-demographics and injury characteristics were recorded at baseline. Use of physical therapy, occupational therapy and speech therapy were recorded at follow-ups. Hierarchical linear modelling was applied to examine service use probabilities across the 4 time-points. RESULTS: Service use decreased substantially over time, with physical therapy being the main service utilized at the 10-year follow-up (physical therapy 16%, occupational therapy 1%, speech therapy 3%). Use of services was related to severity of injury (CT head severity scores and post-traumatic amnesia), female sex, and pre-injury employment. In addition, in this sample, time since injury was associated with use of occupational therapy and speech therapy. CONCLUSION: This study presents a novel model for the long-term probability of use of physical therapy, occupational therapy and speech therapy following traumatic brain injury. The use of services was much lower than the expected problem profile of severe traumatic brain injuries, suggesting an insufficient long-term provision of traditional traumatic brain injury rehabilitation services.


Assuntos
Lesões Encefálicas Traumáticas/reabilitação , Modalidades de Fisioterapia/tendências , Adulto , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos
15.
Trials ; 21(1): 294, 2020 Mar 27.
Artigo em Inglês | MEDLINE | ID: mdl-32216840

RESUMO

BACKGROUND: Traumatic brain injury (TBI) is often associated with life-long medical, cognitive, emotional, and behavioral changes. Although long-lasting disabilities are expected, research on effective treatment options in the chronic phase of TBI is scarce. METHODS/DESIGN: This study protocol describes a randomized controlled trial (RCT) aimed at evaluating the effectiveness of a goal-oriented and community-based intervention for increasing community integration, quality of life, and functional independence in the chronic phase of complicated mild to severe TBI. Participants will be recruited from Oslo University Hospital, Norway. Patients aged 18-72 years living at home with MRI/CT-verified intracranial abnormalities, a TBI diagnosis, a time since injury of ≥ 2 years, and who experience either current TBI-related problems or restrictions in community integration will be included. The 120 participants will be randomized 1:1 to either (a) an intervention group, which will receive an in-home intervention program over 4 months, or (b) a control group receiving standard care in the municipalities. The intervention will consist of six home visits and two telephone contacts with a rehabilitation professional. A SMART-goal approach will be adopted to target the individual's self-reported TBI difficulties in everyday life. Primary outcomes will be self-reported quality of life and participation. Secondary outcomes include symptom burden, emotional functioning, and clinician-assessed global outcome and need for rehabilitation services. Outcomes will be evaluated at baseline and 4-5 and 12 months after baseline. Caregiver burden and general health will be assessed in participating family members. Goal attainment and acceptability will be evaluated in the intervention group. A process evaluation will be carried out to evaluate protocol adherence, and a cost-effectiveness analysis will be applied if the intervention is found to be effective. DISCUSSION: The current study provides an innovative approach to rehabilitation in the chronic phase of TBI evaluated using an RCT design that may inform treatment planning, health policies, and coordination of patient care. Further, the study may demonstrate new modes of establishing collaboration and knowledge transition between specialized rehabilitation facilities and local rehabilitation services that may improve patient outcomes. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03545594. Registered on June 4th, 2018.


Assuntos
Lesões Encefálicas Traumáticas/fisiopatologia , Lesões Encefálicas Traumáticas/reabilitação , Terapia Cognitivo-Comportamental/métodos , Intervenção Psicossocial/métodos , Adolescente , Adulto , Idoso , Cuidadores , Doença Crônica , Análise Custo-Benefício , Feminino , Seguimentos , Estado Funcional , Hospitais Universitários , Visita Domiciliar , Humanos , Masculino , Pessoa de Meia-Idade , Noruega , Assistência ao Paciente , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Índice de Gravidade de Doença , Resultado do Tratamento , Adulto Jovem
16.
J Int Neuropsychol Soc ; 26(7): 654-667, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32098637

RESUMO

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.


Assuntos
Lesões Encefálicas Traumáticas/complicações , Transtornos Cognitivos/complicações , Adolescente , Adulto , Emoções , Função Executiva , Feminino , Escala de Resultado de Glasgow , Humanos , Estudos Longitudinais , Masculino , Memória , Pessoa de Meia-Idade , Testes Neuropsicológicos , Noruega , Estudos Prospectivos , Recuperação de Função Fisiológica , Adulto Jovem
17.
Brain Inj ; 34(3): 335-342, 2020 02 23.
Artigo em Inglês | MEDLINE | ID: mdl-31928233

RESUMO

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.


Assuntos
Lesões Encefálicas Traumáticas/psicologia , Lesões Encefálicas Traumáticas/reabilitação , Competência Mental , Autorrelato , Adulto , Estudos de Coortes , Emprego , Feminino , Humanos , Masculino , Fatores de Tempo
18.
Neuropsychol Rehabil ; 30(2): 281-297, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-29667477

RESUMO

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.


Assuntos
Lesões Encefálicas Traumáticas , Disfunção Cognitiva , Função Executiva , Tempo de Internação , Metacognição , Desempenho Psicomotor , Retorno ao Trabalho , Adolescente , Adulto , Fatores Etários , Idoso , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/fisiopatologia , Lesões Encefálicas Traumáticas/reabilitação , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/fisiopatologia , Disfunção Cognitiva/reabilitação , Função Executiva/fisiologia , Feminino , Seguimentos , Humanos , Masculino , Metacognição/fisiologia , Pessoa de Meia-Idade , Testes Neuropsicológicos , Prognóstico , Estudos Prospectivos , Desempenho Psicomotor/fisiologia , Índice de Gravidade de Doença , Centros de Traumatologia , Adulto Jovem
19.
Brain Inj ; 34(1): 89-97, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31647690

RESUMO

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.


Assuntos
Lesões Encefálicas Traumáticas , Cuidadores , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/epidemiologia , Estudos de Coortes , Família , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Noruega/epidemiologia , Estudos Prospectivos
20.
Front Neurol ; 10: 219, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30923511

RESUMO

Aims: Based on important predictors, global functional outcome after traumatic brain injury (TBI) may vary significantly over time. This study sought to: (1) describe changes in the Glasgow Outcome Scale-Extended (GOSE) score in survivors of moderate to severe TBI, (2) examine longitudinal GOSE trajectories up to 10 years after injury, and (3) investigate predictors of these trajectories based on socio-demographic and injury characteristics. Methods: Socio-demographic and injury characteristics of 97 TBI survivors aged 16-55 years were recorded at baseline. GOSE was used as a measure of TBI-related global outcome and assessed at 1-, 2-, 5-, and 10-year follow-ups. Hierarchical linear models were used to examine global outcomes over time and whether those outcomes could be predicted by: time, time*time, sex, age, partner relationship status, education, employment pre-injury, occupation, cause of injury, acute Glasgow Coma Scale score, length of post-traumatic amnesia (PTA), CT findings, and Injury Severity Score (ISS), as well as the interactions between each of the significant predictors and time*time. Results: Between 5- and 10-year follow-ups, 37% had deteriorated, 7% had improved, and 56% showed no change in global outcome. Better GOSE trajectories were predicted by male gender (p = 0.013), younger age (p = 0.012), employment at admission (p = 0.012), white collar occupation (p = 0.014), and shorter PTA length (p = 0.001). The time*time*occupation type interaction effect (p = 0.001) identified different trajectory slopes between survivors in white and blue collar occupations. The time*time*PTA interaction effect (p = 0.023) identified a more marked increase and subsequent decrease in functional level among survivors with longer PTA duration. Conclusion: A larger proportion of survivors experienced deterioration in GOSE scores over time, supporting the concept of TBI as a chronic health condition. Younger age, pre-injury employment, and shorter PTA duration are important prognostic factors for better long-term global outcomes, supporting the existing literature, whereas male gender and white collar occupation are vaguer as prognostic factors. This information suggests that more intensive and tailored rehabilitation programs may be required to counteract a negative global outcome development in survivors with predicted worse outcome and to meet their long-term changing needs.

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