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Study design Retrospective, descriptive register study. Objective To present the epidemiological and demographic characteristics of the Swedish spinal cord injury (SCI) population. Setting Rehabilitation units in Sweden connected to the national quality register for rehabilitation medicine (Svenskt Register för Rehabiliteringsmedicin: SveReh). The registry includes data from 26 units around the country. Methods Information was extracted from SveReh for patients who underwent rehabilitation for a new onset SCI between 1 January 2016 and 31 December 2020. Data regarding gender, age, aetiology, level of injury, neurogenic bowel and/or bladder dysfunction, complications during the primary rehabilitation, and need for bi-level positive airway pressure (BiPap), continuous positive airway pressure (CPAP), or ventilator were analysed. Results Mean age at onset was 56 years, and men were overrepresented (66%). Tetraplegia was more common among traumatic SCI (TSCI) than non-traumatic SCI (NTSCI). The incidence was 11.9-14.8 per million for TSCI and 8.9-11.8 per million for NTSCI. At discharge, 8% of patients needed a breathing aid. Of those who were ventilator-dependent at discharge, 75% had a TSCI. Disturbed bowel and bladder functioning was noted in 58% of patients at discharge. The median time spent at the unit was 40 days, but it was approximately 2 weeks longer for those with a TSCI. Conclusions Systematic and updated data on the Swedish SCI population show a pattern similar to Scandinavian countries with high age at onset and falls being the main cause of TSCI. The TSCI incidence was lower than in previous studies, and the results for NTSCI were novel. Sponsorship This research received no sponsorship.
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BACKGROUND: Spasticity is a frequent complication of diseases of and injuries to the central nervous system. Early treatment prevents further loss of function and spasticity-related complications. Basic spasticity treatment begins in the primary healthcare service and includes physiotherapy, occupational therapy and oral spasmolytics, while treatment with botulinum toxin and baclofen pump is carried out by the specialist healthcare services. The objective of the study was to obtain an overview of the availability and organisation of these specialised forms of spasticity treatment in Norway. MATERIAL AND METHOD: We conducted a survey in which a digital questionnaire was sent to hospitals that offer spasticity treatment. RESULTS: A total of 30 of 47 hospital departments/outpatient clinics (hereafter referred to as 'hospital units') distributed across all Norwegian health regions responded to the questionnaire. Spasticity treatment with botulinum toxin and baclofen pump was available in all of the health regions. Median time from first referral was 10 weeks (interquartile range 7 weeks). A total of 14 of 30 hospital units expressed a need for more treatment days to cover the local demand. Of the 30 hospital units, 23 had interdisciplinary teams with doctors, physiotherapists, occupational therapists and/or nurses. For treatment with botulinum toxin, ultrasound was used as guidance in 22 of 26 hospital units, EMG was used in 15 units and electrical muscle stimulation was used in 11 units. INTERPRETATION: The study suggests that there may be a need for improvements to specialised spasticity treatment in Norway to ensure good patient care pathways, interdisciplinary assessments, and safe and efficient performance of the practical interventions.
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Baclofeno , Toxinas Botulínicas , Humanos , Baclofeno/uso terapêutico , Hospitais , Espasticidade Muscular/tratamento farmacológico , Espasticidade Muscular/etiologia , NoruegaRESUMO
BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that affects motor neurons. In Europe, disease-causing genetic variants have been identified in 40-70% of familial ALS patients and approximately 5% of sporadic ALS patients. In Norway, the contribution of genetic variants to ALS has not yet been studied. In light of the potential development of personalized medicine, knowledge of the genetic causes of ALS in a population is becoming increasingly important. The present study provides clinical and genetic data on familial and sporadic ALS patients in a Norwegian population-based cohort. METHODS: Blood samples and clinical information from ALS patients were obtained at all 17 neurological departments throughout Norway during a 2-year period. Genetic analysis of the samples involved expansion analysis of C9orf72 and exome sequencing targeting 30 known ALS-linked genes. The variants were classified using genotype-phenotype correlations and bioinformatics tools. RESULTS: A total of 279 ALS patients were included in the study. Of these, 11.5% had one or several family members affected by ALS, whereas 88.5% had no known family history of ALS. A genetic cause of ALS was identified in 31 individuals (11.1%), among which 18 (58.1%) were familial and 13 (41.9%) were sporadic. The most common genetic cause was the C9orf72 expansion (6.8%), which was identified in 8 familial and 11 sporadic ALS patients. Pathogenic or likely pathogenic variants of SOD1 and TBK1 were identified in 10 familial and 2 sporadic cases. C9orf72 expansions dominated in patients from the Northern and Central regions, whereas SOD1 variants dominated in patients from the South-Eastern region. CONCLUSION: In the present study, we identified several pathogenic gene variants in both familial and sporadic ALS patients. Restricting genetic analysis to only familial cases would miss more than 40 percent of those with a disease-causing genetic variant, indicating the need for genetic analysis in sporadic cases as well.
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Esclerose Lateral Amiotrófica , Doenças Neurodegenerativas , Esclerose Lateral Amiotrófica/epidemiologia , Esclerose Lateral Amiotrófica/genética , Proteína C9orf72/genética , Humanos , Epidemiologia Molecular , Superóxido Dismutase-1/genéticaRESUMO
STUDY DESIGN: Retrospective study. OBJECTIVES: To determine prevalence of respiratory complications in individuals with spinal cord injury (SCI) during the initial rehabilitation at the spinal cord injury unit (SCU) and to describe the subsequent effect on mortality. SETTING: The SCU at the university hospital in Gothenburg, Sweden. METHODS: We reviewed the medical charts of newly injured persons with SCI who were admitted to the SCU between 1/1/2010 and 12/31/2014. Outcome measures were time to death, length of stay, occurrence of respiratory complications, and the use of breathing aids. RESULTS: A total of 136 consecutive individuals were included; 53% with cervical SCI and 20% with lower SCI suffered from one or several respiratory complications during their initial rehabilitation in the SCU. At follow-up, 10/1/2018, 20% of the individuals were deceased. The most common cause of death was related to respiratory insufficiency. The individuals with respiratory complications during the initial rehabilitation in the SCU had particularly shortened survival compared with those without. The relative risk (RR) of dying if the person suffered from any respiratory complications during their initial rehabilitation in the SCU was 2.1 times higher than for those with no respiratory complications (RR, 2.1; 95% CI, 1.1-3.9). CONCLUSIONS: Having respiratory complications at the SCU provides preliminary data to support the claim that respiratory complications predict premature mortality. Early diagnosis and prophylactic measures seem to be necessary to mitigate the adverse consequences of serious respiratory problems.
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Traumatismos da Medula Espinal , Hospitais Universitários , Humanos , Avaliação de Resultados em Cuidados de Saúde , Estudos Retrospectivos , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/epidemiologia , Suécia/epidemiologiaRESUMO
INTRODUCTION: More knowledge of the relationships between kinematic measures and clinical assessments is required to guide clinical decision making and future research. OBJECTIVES: To determine which kinematic variables obtained during a drinking task were associated with clinical assessments of upper extremity functioning in people with spinal cord injury (SCI). METHODS: In total, 25 individuals with chronic cervical (n = 17) or thoracic (n = 8) complete (n = 14) or motor incomplete (n = 11) SCI (mean age 58.4, SD 13.8) were included. Kinematic data, including movement time, smoothness and joint angles was captured with a 5-camera optoelectronic system during a unimanual drinking task. Action Research Arm Test (ARAT), Sollerman Hand Function Test (SHFT) and basic hand classification of the Upper Extremity Data Set (ISCI-Hand) were used as clinical assessments. Multiple regression analysis was used to identify kinematic variables associated with clinical assessments after controlling for potential confounding factors, such as, age, severity of SCI, sensory function, and hand surgery. RESULTS: Movement time, smoothness and movement pattern kinematics including trunk displacement, elbow and wrist joint angles were correlated (p < 0.05) with all three clinical scales while the velocity-related kinematics and inter-joint coordination showed low correlations. Multiple regression analysis revealed that wrist angle combined with movement time or smoothness explained 82% and 77% of the total variance in ARAT and SHFT, respectively. Wrist angle alone explained 59% of the variance in ISCI-Hand. The proprioception of the hand increased the explanatory power in the models of ARAT and SHFT. Associations between kinematics and clinical assessments in the subgroup with cervical SCI were equivalent to the whole group analyses. The number of participants in the subgroup with thoracic SCI was small and only allowed limited analysis. CONCLUSIONS: Wrist angle, movement time, movement smoothness are the most important kinematic variables associated with upper extremity clinical assessments in people with SCI. The results are most valid for individuals with cervical SCI. All three assessments are appropriate for SCI. Further research with larger representative sample of thoracic SCI needed.
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Traumatismos da Medula Espinal , Extremidade Superior , Fenômenos Biomecânicos , Mãos , Humanos , Pessoa de Meia-Idade , MovimentoRESUMO
BACKGROUND: We evaluated quality of life among subjects with upper- and lower-limb spasticity who received escalating doses of incobotulinumtoxinA (total body doses up to 800 U) in the prospective, single-arm, dose-titration TOWER study. METHODS: In this exploratory trial, subjects (N = 155; 18-80 years of age) with upper- and lower-limb spasticity due to cerebral causes who were deemed to require total body doses of up to 800 U incobotulinumtoxinA received three consecutive injection cycles of incobotulinumtoxinA (400, 600, and up to 800 U), each with 12 to 16 weeks' follow-up. QoL was assessed using the EuroQol 5-dimensions questionnaire, three-level (EQ-5D), before and 4 weeks post-injection in each injection cycle and at the end of injection cycle 3. RESULTS: The mean EQ-5D visual analog scale scores of 155 participants continuously improved from study baseline to 4 weeks post-injection in all injection cycles (mean [standard deviation] change 6.7 [14.1], 9.6 [16.3], and 8.6 [17.0] for injection cycles 1, 2, and 3, respectively; p < 0.0001 for all, paired sample t-test). In general, among those with a change in the EQ-5D rating of their condition, the proportion of subjects with 'improvement' was greater than that with 'worsening' for individual EQ-5D dimensions across all injection cycles. At the end of injection cycle 3, the proportion of subjects rating their condition as 'normal' increased from study baseline for all dimensions, and there was a ≥ 46% reduction in the proportion of subjects with a rating of 'severe impairment'. CONCLUSION: These preliminary results suggest that escalating incobotulinumtoxinA doses up to 800 U are associated with improvement in quality of life ratings in subjects with multifocal upper- and lower-limb spasticity, and form a basis for future comparator studies. TRIAL REGISTRATION: ClinicalTrials.gov, NCT01603459. Date of registration: May 22, 2012.
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Toxinas Botulínicas Tipo A/administração & dosagem , Espasticidade Muscular/tratamento farmacológico , Fármacos Neuromusculares/administração & dosagem , Qualidade de Vida , Adolescente , Adulto , Idoso , Relação Dose-Resposta a Droga , Extremidades/fisiopatologia , Feminino , Humanos , Injeções , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Inquéritos e QuestionáriosRESUMO
STUDY DESIGN: A national, retrospective, cross-sectional study. OBJECTIVES: To analyze the prevalence of pressure injury (PI), and characteristics associated with PI development in the hospitalized population of persons with a newly acquired spinal cord injury (SCI) between 2004 and 2014. SETTING: All three specialized Spinal Cord Units in Norway. METHODS: Demographic data related to prevalence and potential risk factors were retrieved from the electronic medical record (EMR). Statistical analyses were performed, using IBM SPSS Statistics, version 23. RESULTS: We identified 1012 individuals with a new SCI. Mean age at injury was 48 years (SD 19). The period prevalence of PI was 16% (95% CI = 0.14-0.19), and identified PI associations were complete SCI (OR = 0.1), being injured abroad (OR = 2.4), bowel (OR = 13), and bladder (OR = 9.2) dysfunction; comorbidities like diabetes mellitus 1 (OR = 7.9), diagnosed depression (OR = 3.8), ventilator support (OR = 3.0), drug abuse (OR = 3.0), and concurrent traumatic brain injury (OR = 1.7). Individuals in the age group of 15-29 years had higher odds of PI compared with middle-aged individuals (45-59 years). CONCLUSION: PI is a serious complication after SCI. The association between depression or comorbidity and PI occurrence should be investigated more thoroughly. We recommend implementation of a simple follow-up program regarding observation and prevention of PI. Increased awareness of factors that could contribute to PI will help to focus on better prevention and early recognition of PI. This will contribute to more optimal rehabilitation.
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Reabilitação Neurológica/tendências , Úlcera por Pressão/epidemiologia , Centros de Reabilitação/tendências , Traumatismos da Medula Espinal/epidemiologia , Traumatismos da Medula Espinal/reabilitação , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Noruega/epidemiologia , Úlcera por Pressão/diagnóstico , Úlcera por Pressão/etiologia , Estudos Retrospectivos , Adulto JovemRESUMO
STUDY DESIGN: Retrospective cohort study. OBJECTIVES: We studied complications during early rehabilitation and their relation to length of stay (LOS) in the hospital as well as to survival in people with traumatic spinal cord injury (TSCI). SETTING: All specialized hospitals of Saint Petersburg. METHODS: We analysed all charts of patients admitted with acute TSCI to the city hospitals, 2012-2016. Patient characteristics, complications, time and cause of death, and LOS were recorded. Mean values with standard deviations and t-tests were used. We analysed mortality rate using the Kaplan-Meier method and calculated relative risks (RRs). RESULTS: A total of 311 patients with TSCI were included. Complications occurred in 34% of patients; most were respiratory complications and pressure ulcers. Complications occurred more often in those with concomitant traumatic brain injury (TBI) (RR = 1.4, 95% CI: 1.2-1.8). All complications prolonged LOS (median, 11 days) and increased mortality in the acute phase (p < 0.001). In the early phase, 15% died, with a median time to death of 13 days. Respiratory complications markedly increased the death rate (RR = 18, 95% CI: 15-22). Mortality rate correlated also with age, TSCI severity and level, and concomitant TBI. Alcohol/drug consumption before TSCI increased the likelihood for complications (RR = 1.7, 95% CI: 1.3-2.1) and mortality (RR = 2.2, 95% CI: 1.6-3.1). CONCLUSION: Focus on prevention as well as early and optimal treatment of complications, together with no or low alcohol/drug consumption may reduce mortality in the early phase after TSCI and at the same time shorten LOS.
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Lesões Encefálicas Traumáticas , Tempo de Internação , Úlcera por Pressão , Transtornos Respiratórios , Traumatismos da Medula Espinal , Doença Aguda , Adolescente , Adulto , Idoso , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/mortalidade , Lesões Encefálicas Traumáticas/reabilitação , Comorbidade , Feminino , Humanos , Tempo de Internação/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Úlcera por Pressão/etiologia , Úlcera por Pressão/mortalidade , Transtornos Respiratórios/etiologia , Transtornos Respiratórios/mortalidade , Estudos Retrospectivos , Federação Russa/epidemiologia , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/mortalidade , Traumatismos da Medula Espinal/reabilitação , Adulto JovemRESUMO
STUDY DESIGN: Retrospective population-based cohort study. OBJECTIVES: To characterise the epidemiology of traumatic spinal cord injury (TSCI) among the inhabitants of Saint Petersburg, Russia. SETTING: All hospitals in Saint Petersburg. METHODS: Charts for all individuals admitted to city hospitals from 1st January 1 2012 to 31st December 2016 with acute TSCI were reviewed. Incidence rates were calculated for the whole period and for each year separately. Gender-specific and age-specific incidence rates were calculated, and epidemiological characteristics and possible risk factors were analysed. RESULTS: A total of 361 people were identified. The average annual incidence rate was 17.6 per million, varying from 21.2 (2013) to 13.6 (2016), and 70.9% were men. Mean age at injury was 42.1 years. Injuries from falls represented 49.8% of cases, and motor vehicle accidents 18.9%. The male:female ratio in the low-falls group was 1.2:1, and among the elderly patients, it was 0.5:1. Lesions at the cervical level were involved in 49.3%, thoracic in 24.7%, and lumbar/sacral in 23.5%. TSCI was complete in 16.9%. Concomitant injuries occurred in 47.2% of cases, and traumatic brain injuries in 37.7%. CONCLUSION: TSCI incidence decreased during the observation period and was 2.4 times more common among men than women. In half of the cases, injuries involved the cervical level, and a fall was the most frequent injury cause. Elderly women more often had falls from a low height than men. Multiple injuries-most frequently traumatic brain injuries-were common.
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Acidentes por Quedas , Acidentes de Trânsito , Traumatismos da Medula Espinal/diagnóstico , Traumatismos da Medula Espinal/epidemiologia , Acidentes de Trânsito/tendências , Adolescente , Adulto , Idoso , Vértebras Cervicais , Estudos de Coortes , Feminino , Hospitalização/tendências , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Federação Russa/epidemiologia , Adulto JovemRESUMO
INTRODUCTION: Spinal cord injury includes damage to the motor, sensory and autonomic nervous system. CASE PRESENTATION: A man in his seventies was admitted to hospital after an acute traumatic incomplete cervical spinal cord injury. Over the following weeks, he experienced multiple febrile episodes with CRP elevated to 100 >300 mg/L, but few other symptoms. Two weeks after admission, he was febrile with neuropathic pain, and oxygen saturation spontaneously decreased from 98 % to 87 %. Chest X-ray showed pneumonia, which was treated with antibiotics. Four weeks after the injury he again experienced fever and increased spasticity. Clinical examination revealed dull abdominal pain on palpation in the left upper quadrant. The same day, a PEG placement procedure had been performed. CT abdomen, chest X-ray and microbiological investigation revealed no clear infectious origin. The patient was treated with antibiotic coverage for presumed abdominal infection, with successful recovery. Two months after his injury, the patient became febrile and delirious. Clinical examination revealed mild pain on palpation in the upper right quadrant. CT abdomen revealed cholecystitis. DISCUSSION: Diagnosis of acute serious illness in a patient with spinal cord injury may be challenging due to scarce and atypical clinical presentation. Prevalence of gallstones is increased after spinal cord injury.
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Colecistite/etiologia , Traumatismos da Medula Espinal/complicações , Acidentes por Quedas , Idoso , Vértebras Cervicais , Colecistite/diagnóstico por imagem , Colecistite/tratamento farmacológico , Colecistite/cirurgia , Delírio/etiologia , Febre/etiologia , Humanos , Imageamento por Ressonância Magnética , Masculino , Dor Referida , Traumatismos da Medula Espinal/diagnóstico por imagem , Tomografia Computadorizada por Raios XRESUMO
New clinical experience with 9-delta-tetrahydocannabinol (THC) and cannabidiol (CBD) oromucosal spray (Sativex®) involving more than an additional 1,000 patients with MS spasticity (approximately 150 in clinical studies and 900 in post-marketing surveillance studies) have become available in 2013 and are reviewed. A randomized, placebo controlled long-term follow-up clinical trial with THC:CBD spray versus placebo demonstrated that it was not associated with cognitive decline, depression or significant mood changes after 12 months of treatment. Furthermore, in a prospective observational pilot study involving 33 patients (60% female) aged 33-68 years and a mean disease duration of 6.6 years, THC:CBD oromucosal spray did not adversely influence standard driving ability in patients with moderate to severe MS spasticity. Other new long term observational data about the use of THC:CBD oromucosal spray in clinical practice are available from patient registries in the UK, Germany and Spain. Findings to date reinforce the efficacy and safety observed in Phase III clinical trials. It is of interest that in practice average dosages used by patients tended to be lower than those reported in clinical studies (5-6.4 vs. >8 sprays/day), and effectiveness was maintained in the majority of patients. Importantly, no additional safety concerns were identified in the registry studies which included findings from patients who have been treated for prolonged periods (in the German/UK registry 45% of patients had >2 years exposure). Thus, these new data support a positive benefit-risk relationship for THC:CBD oromucosal spray during longer-term use.
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Esclerose Múltipla/complicações , Espasticidade Muscular/tratamento farmacológico , Espasticidade Muscular/etiologia , Parassimpatolíticos/uso terapêutico , Extratos Vegetais/uso terapêutico , Afeto/efeitos dos fármacos , Condução de Veículo , Canabidiol , Ensaios Clínicos como Assunto , Cognição/efeitos dos fármacos , Dronabinol , Combinação de Medicamentos , Humanos , Esclerose Múltipla/fisiopatologia , Sprays Orais , Parassimpatolíticos/administração & dosagem , Parassimpatolíticos/efeitos adversos , Extratos Vegetais/administração & dosagem , Extratos Vegetais/efeitos adversos , Vigilância de Produtos Comercializados , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
BACKGROUND: There is a need for knowledge regarding the medical management of motor neuron disease/amyotrophic lateral sclerosis (MND/ALS) with and without cognitive decline. It has scarcely been studied whether cognitive decline will influence the course of disease or interfere with the use of life-prolonging aids for respiration and nutrition. Cognitive decline may impact the length of illness. METHODS: Patients were prospectively recruited from an ALS outpatient clinic at Haukeland University Hospital. Participants underwent the standardized cognitive test Edinburgh Cognitive and Behavioral ALS Screen Norwegian version (ECAS-N), clinical examination, and were functionally assessed by the ALS Functioning Rating Scale-revised version (ALS-FRS-R). The time and indication for installation of a feeding tube [percutaneous endoscopic gastrostomy (PEG)] and/or respiratory aid [bilevel positive airway pressure device (BiPAP)] or invasive respirator were retrieved from the medical records. Kaplan-Meier tests were used to study the risk of death and the probability for implementing PEG and/or BiPAP in relation to time from diagnosis. The individual assessment was used for analyzing the establishment of aids in relation to point of death. RESULTS: A total of 40 patients were evaluated for the study, 31 of whom were finally included. None of the included patients did not use an invasive respirator. The patients were divided into two subgroups (normal cognition or cognitive decline, cut-off 92 points) according to their performance in the ECAS-N. The course of the disease, shown as a risk of death, was higher among the ALS/MND patients with cognitive decline compared to those with cognitive intact function throughout the study period. The cognitive status did not influence the fitting of aids. Use of aids did not influence the survival in subgroups significantly. CONCLUSIONS: The study demonstrated shorter survival for the patients with ALS/MND with cognitive decline compared to those without cognitive decline. The practice and implementation of both BiPAP and PEG did not differ among the ALS/MND patients with and without cognitive decline in Norway.
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Esclerose Lateral Amiotrófica , Disfunção Cognitiva , Doença dos Neurônios Motores , Humanos , Esclerose Lateral Amiotrófica/terapia , Estudos Prospectivos , Doença dos Neurônios Motores/complicações , Doença dos Neurônios Motores/terapia , Nutrição EnteralRESUMO
Improvements in care and rehabilitation have resulted in a higher proportion of people living with spinal cord injury (SCI), which calls for an increased focus on participation and autonomy. This observational cross-sectional study investigated the impact of SCI on autonomy and how it correlates to activity performance and upper extremity functioning. A total of 25 adults (mean age 58 years) with chronic cervical or thoracic SCI were included. Self-perceived autonomy was measured with Impact on Participation and Autonomy questionnaire, independence in activities of daily living (ADL) with Spinal Cord Independence Measure, upper extremity functioning with Action Research Arm Test (ARAT) and kinematic measures of the drinking task. The results showed that most participants perceived injury-related restrictions in outdoor autonomy (80%), family role (76%), and in indoor autonomy (72%). Independence in self-care (r = 0.72), mobility (r = 0.59) and upper extremity kinematics of movement time (r = 0.63) and smoothness (r = 0.49) were correlated to indoors autonomy. Social life autonomy was correlated to self-care (r = 0.50) and ARAT (r = 0.41). In conclusion, autonomy was perceived restricted after SCI in several major life areas and correlated with independence in ADL and upper extremity functioning. The aspects of autonomy should be considered more in goal setting and clinical decision-making.
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Atividades Cotidianas , Traumatismos da Medula Espinal , Adulto , Humanos , Pessoa de Meia-Idade , Traumatismos da Medula Espinal/reabilitação , Extremidade Superior , Movimento , AutocuidadoRESUMO
STUDY DESIGN: A prospective randomized controlled trial (RCT) in persons with spinal cord injury (SCI) and ongoing pressure injury (PI). OBJECTIVES: The main aim was to perform a cost-utility analysis (CUA) alongside the RCT comparing regular care to regular care with additional videoconference consultations. Secondary aims were to assess costs and greenhouse gas emission related to transportation in the two study groups. SETTING: Two spinal cord units in Norway. METHODS: Participants were allocated to a regular care group (RCG) and a regular care group with additional videoconference (VCG), in a 1-year follow-up between 2016 and 2018. Costs were prospectively collected, and health-related quality of life (HRQoL) data were collected at baseline and 12 months. The outcome was quality-adjusted life years (QALYs), derived from the EQ-5D-5L questionnaire. Results are reported as incremental cost-effectiveness ratio (ICER), expressed as the cost per additional QALY gained. Transportation related costs and environmental emissions were compared by t-tests. RESULTS: There were 56 participants included, 28 in each group. Of these 27 in the VCG and 26 in the RCG completed. Three participants died. The mean cost per patient was 8819 in the VCG and 3607 in the RCG, with 0.1 QALYs gained in the VCG. No significant differences were identified regarding HRQoL or secondary outcomes. CONCLUSION: The VCG costs 5212 more for an additional 0.1 QALYs, giving an ICER of 52,120 per QALY. No significant differences were found regarding transportation-related costs, or emission of greenhouse gases. TRIAL REGISTRATION: www. CLINICALTRIALS: gov ; NCT02800915, TeleSCIpi. CRISTIN.no. https://app.cristin.no/projects/show.jsf?id=545284 . Sunnaas Rehabilitation hospital's web page, available at https://www.sunnaas.no/fag-og-forskning/fagstoff/sar .
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Úlcera por Pressão , Traumatismos da Medula Espinal , Humanos , Análise Custo-Benefício , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
PURPOSE: To investigate cognitive functioning and emotional distress in adults aged 55 to 68 years old with spina bifida myelomeningocele (SBM), both with and without hydrocephalus. A secondary aim was to explore the associations between psychosocial factors in relation to emotional distress. MATERIALS AND METHODS: Cross-sectional study of eleven females and eight males with SBM, five with and twelve without hydrocephalus. Cognitive functioning was investigated with neuropsychological tests and self-report measures. Furthermore, participants completed questionnaires regarding resilience, access to social support, coping, and emotional distress. Descriptive statistics were applied, and Spearman Rho correlation coefficients were used to explore the relationships between psychosocial factors and emotional distress. RESULTS: Eleven exhibited normal cognitive functioning. An observed difference was seen between participants with and without hydrocephalus, where six and five persons reported clinical levels of depression and anxiety, respectively. Positive perceptions of self and future were associated with lower levels of depression and anxiety. CONCLUSION: This study adds important information about cognitive functioning and emotional distress in an understudied population. The results indicated normal cognitive functioning in adults aged 55 to 68 years with SBM without hydrocephalus. Prevalence of emotional distress was comparable with previous studies of younger adults with SBM. There is a need for longitudinal studies investigating cognition and psychological health to fully capture important aspects of the life course of SBM with and without hydrocephalus.
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Hidrocefalia , Meningomielocele , Angústia Psicológica , Disrafismo Espinal , Feminino , Masculino , Pessoa de Meia-Idade , Humanos , Idoso , Meningomielocele/complicações , Estudos Transversais , Disrafismo Espinal/complicações , CogniçãoRESUMO
STUDY DESIGN: Retrospective population-based study with mortality follow-up. OBJECTIVE: To study mortality, causes and risk factors for death in Estonian patients with traumatic spinal cord injury (TSCI). SETTING: All Estonian hospitals. METHODS: Medical records of patients with TSCI from all regional, central, general, and rehabilitation hospitals in Estonia from 1997 to 2007, were retrospectively reviewed. Mortality status was ascertained as of 31 December 2011. Causes of death were collected from the Estonian Causes of Death Registry. Standardized mortality ratios (SMRs) were calculated for the entire sample and for causes of death. A Cox proportional hazards modeling was used to identify the risk indicators for death. RESULTS: During the observation period (1997-2011) 162 patients of 595 died. Nearly half of the patients (n = 76) died during the first year after TSCI. The main causes of death were external causes (30%), cardiovascular disease (29%). and suicide (8%). The overall SMR was 2.81 (95% confidence interval 2.40-3.28) and SMR was higher for women than for men (3.80 vs. 2.70). Cause-specific SMRs were markedly elevated for sepsis and suicide. Mortality was significantly affected by the age at the time of injury, neurological level, and extent of the injury as well as the year of TSCI and complications. CONCLUSION: Life expectancy is significantly decreased in patients with TSCI in Estonia compared with the general population. Deaths during the first year after the injury have an important impact on statistics. Treatment of cardiovascular diseases, infections, and prevention of suicide are useful for reducing mortality in patients with TSCI.
Assuntos
Expectativa de Vida , Traumatismos da Medula Espinal/mortalidade , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Causas de Morte , Criança , Pré-Escolar , Estônia/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modelos de Riscos Proporcionais , Estudos Retrospectivos , Fatores de Risco , Adulto JovemRESUMO
Upper extremity functioning is important for achieving independence in activities of daily living (ADL). A better understanding of relationships between different aspects of independence in ADL after spinal cord injury (SCI) and upper extremity functioning is required to guide rehabilitation practices. To determine which aspects of independence in ADL are correlated with upper extremity functioning in individuals with cervical or thoracic SCI. A total of 25 adults (mean age 58.4 years, 72% men) with established cervical or thoracic SCI were recruited. Independence in ADL was assessed by Spinal Cord Independence Measure (SCIM-III) and upper extremity functioning by kinematic measures (movement time, smoothness, and wrist angle during drinking task), grip strength, Upper Extremity Motor and Sensory Score, Box and Block Test (BBT), Action Research Arm Test (ARAT), and Upper Extremity Basic Data Set (ISCI-Hand and ISCI-Shoulder). Spearman correlation coefficients were used for data analyses. The SCIM-self-care subscale, particularly the feeding and dressing items, correlated moderately (r ≥ 0.5) with movement time and smoothness, grip strength, ARAT, BBT, and ISCI-Hand. The SCIM-respiration/sphincter subscale and the SCIM-mobility showed very low and low correlations with upper extremity assessments. However, at item level, respiration and bed/wheelchair mobility showed moderate correlations. Independence in self-care as domain and feeding/dressing, respiration and bed/wheelchair mobility as separate items were dependent on upper extremity functioning in individuals with cervical or thoracic SCI. Movement time and smoothness along with BBT, grip strength, ARAT, and ISCI-Hand can be used as indicators of independence in ADL. These findings can provide guidance to clinical practice in selection of upper extremity assessments in the context for ADL in individuals with SCI.
Assuntos
Atividades Cotidianas , Traumatismos da Medula Espinal , Adulto , Masculino , Humanos , Pessoa de Meia-Idade , Feminino , Estudos Transversais , Avaliação da Deficiência , Traumatismos da Medula Espinal/reabilitação , Extremidade SuperiorRESUMO
BACKGROUND: Research collaboration highlight a need for validated tests in other languages than English. Translation and culture adjustments may threaten essential features of the original instrument. OBJECTIVE: To assess the internal consistency, inter-rater and test-retest reliability, and construct validity of the Norwegian version of the Edinburgh Cognitive and Behavioural Amyotrophic Lateral Sclerosis (ALS) Screen (ECAS-N). METHODS: Performance of 71 subjects with ALS, 85 healthy controls (HC) and 6 controls with Alzheimer's disease (AD) were assessed with the ECAS-N. Test-retest interval was four months. Internal consistency was evaluated using Cronbach's alpha; reliability was assessed using intraclass correlation coefficient (ICC), Cohen's kappa, and Bland Altman plot. Five hypothesis, including the Montreal Cognitive Assessment (MoCA) screen, was evaluated for construct validity. RESULTS: ECAS-N total score produced a Cronbach's alpha of 0.65, had excellent inter-rater reliability (ICC = 0.99) and acceptable test-retest reliability (ICC = 0.73). Construct validity analysis suggested valid use of the ECAS-N to distinguish people with ALS-specific cognitive impairment from HC (p = 0.001) and those with AD (p = 0.002). The MoCA and ECAS-N were moderately correlated (r = 0.53). CONCLUSION: The ECAS-N has potential to be used by different testers in clinical practice and research to screen patients with ALS who speak Norwegian and for documenting cognitive impairment over time.