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OBJECTIVES: Patients with cirrhosis experience a worsened quality of life; this may be quantified by the use of health-related QoL (HRQoL) constructs, such as the chronic liver disease questionnaire (CLDQ) and EuroQoL Group-visual analog scale (EQ-VAS). In this multicenter prospective study, we aimed to evaluate HRQoL as a predictor of unplanned hospital admission/early mortality, identify HRQoL domains most affected in cirrhosis, and identify predictors of low HRQoL in patients with cirrhosis. METHODS: Multivariable logistic regression was used to determine independent association of HRQoL with primary outcome and identify predictors of low HRQoL. HRQoL was also compared with population norms. RESULTS: In this cohort of 402 patients with cirrhosis, mean model for end-stage liver disease was 12.5 (4.9). More than 50% of the cohort had low HRQoL, considerably lower than population norms. HRQoL (measured by either CLDQ or EQ-VAS) was independently associated with the primary outcome of short-term unplanned hospitalization/mortality. Every 1-point increase in the CLDQ and every 10-point increase in the EQ-VAS reduced the risk of reaching this outcome by 30% and 13%, respectively. Patients with cirrhosis had lower HRQoL scores than population norms across all domains of the CLDQ. Younger age, female sex, current smoker, lower serum albumin, frailty, and ascites were independently associated with low CLDQ. DISCUSSION: Patients with cirrhosis experience poor HRQoL. HRQoL is independently associated with increased mortality/unplanned hospitalizations in patients with cirrhosis and could be an easy-to-use prognostic screen that patients could complete in the waiting room before their appointment.
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Hospitalización/estadística & datos numéricos , Cirrosis Hepática/complicaciones , Calidad de Vida , Alberta , Femenino , Indicadores de Salud , Humanos , Cirrosis Hepática/mortalidad , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Factores de Riesgo , Índice de Severidad de la Enfermedad , Encuestas y CuestionariosRESUMEN
Advance care planning (ACP) and goals of care designation (GCD) are being integrated into modern health care. In cirrhosis, uptake and adoption of these practices have been limited with physicians citing many perceived barriers and limitations. Recognizing the many tangible benefits of ACP and GCD processes in patients with life-limiting chronic diseases, the onus is on health practitioners to initiate and direct these conversations with their patients and surrogates. Drawing upon the literature and our experiences in palliative care and cirrhosis, we provide an actionable framework that can be readily implemented into a busy clinical setting by a practitioner. Conversation starters, visual aids, educational resources (for patients and practitioners), and videos of mock physician-patient scenarios are presented and discussed. Importantly, we have customized each of these tools to meet the unique health care needs of patients with cirrhosis. The inherent flexibility of our approach to ACP discussions and GCD can be further modified to accommodate practitioner preferences. CONCLUSION: In our clinics, this assemblage of "best practice tools" has been well received by patients and surrogates enabling us to increase the number of outpatients with cirrhosis who have actively contributed to their GCD before acute health events and are supported by well-informed surrogates. (Hepatology 2018;67:2025-2040).
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Planificación Anticipada de Atención , Cirrosis Hepática/terapia , Atención Dirigida al Paciente/métodos , Relaciones Médico-Paciente , Manejo de la Enfermedad , Humanos , Cuidados Paliativos/métodos , MédicosRESUMEN
Objective: To describe the development of multimodal, web-based educational resources about cirrhosis alongside patients and caregivers. Methods: We used an iterative process that was guided by the Strategy for Patient Oriented Research (SPOR) patient engagement framework in describing patient engagement activities to partner with a team of 16 patients and caregivers (Patient Advisory Team (PAT)). This process included five phases: a) Prioritize and gather content, b) design and build the website and videos, c) gather and integrate feedback, d) improve user accessibility, and e) assess usability and knowledge uptake for users. Results: This 2-year process resulted in a 55-page website and 78 animated and live-action videos on cirrhosis complications, procedures, nutrition, and exercise. We implemented usability testing through pre-defined tasks and a think-aloud method from individuals with no previous exposure to the website to assess navigation, appearance, and content issues. Following usability testing, we have been gathering quantitative data from each unique page about relevance and ease of use, as well as qualitative data on the value of the content itself. Conclusions: Collaboration between clinicians, patients, and caregivers is key to developing high-quality digital educational resources. Lessons from our process may help other organizations looking to address disease-specific knowledge gaps. Next steps with www.cirrhosiscare.ca will be continued iterative refinement and structured impact evaluation. Innovation: This project used a patient-centered approach to develop a comprehensive online educational resource for patients with cirrhosis. By having patients with cirrhosis as a key part of our team, we ensured that the site met the needs of this unique population.
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Background: In 2014, the province of Alberta launched a campaign to promote public awareness of advance care planning (ACP) and its associated two-part documentation-a Goals of care designation (GCD, a medical order written by a health care practitioner detailing wishes for care) and a personal directive (PD, a document naming a surrogate decision maker). Notably, unlike the GCD, the PD can be self-initiated independent of a health practitioner. Objective: Two years after the campaign, we aimed to assess knowledge and recall of participation in ACP among cirrhosis patients. Design/Setting: Consecutive adult cirrhosis patients attending one of two specialty cirrhosis clinics in Edmonton, Alberta, were surveyed. Results: Ninety-seven patients were included. Mean model for end-stage liver disease was 12. Although 97% of patients indicated it was extremely important to know the reality of their illness, only 53% understood that cirrhosis would affect their future quality of life. Thirty-three percent of patients had completed a PD and 14% had completed a GCD. Seventy-eight percent of patients believed a GCD was important to them and 85% preferred to complete it in an outpatient clinic setting. Only a minority of patients who had taken the initiative to complete a PD in the community also had a GCD. Conclusions: Despite efforts to raise awareness of and educate Albertans about ACP, <20% of cirrhosis patients have a completed GCD. Additional strategic prioritization is required in both patients and providers to ensure that health practitioner-facilitated ACP is carried out as standard-of-care in all patients with cirrhosis.
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Planificación Anticipada de Atención , Enfermedad Hepática en Estado Terminal , Adulto , Directivas Anticipadas , Alberta , Humanos , Cirrosis Hepática , Percepción , Estudios Prospectivos , Calidad de Vida , Índice de Severidad de la EnfermedadRESUMEN
It is commonly accepted that locomotor-related neuronal circuitry resides in the lumbosacral spinal cord. Pharmacological agents, epidural electrical stimulation, and sensory stimulation can be used to activate these instrinsic networks in in vitro neonatal rat and in vivo cat preparations. In this study, we investigated the use of low-level tonic intraspinal microstimulation (ISMS) as a means of activating spinal locomotor networks in adult cats with complete spinal transections. Trains of low-amplitude electrical pulses were delivered to the spinal cord via groups of fine microwires implanted in the ventral horns of the lumbosacral enlargement. In contrast to published reports, tonic ISMS applied through microwires in the caudal regions of the lumbosacral enlargement (L7-S1) was more effective in eliciting alternating movements in the hindlimbs than stimulation in the rostral regions. Possible mechanisms of action of tonic ISMS include depolarization of locally oscillating networks in the lumbosacral cord, backfiring of primary afferents, or activation of propriospinal neurons.
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Relojes Biológicos/fisiología , Estimulación Eléctrica/métodos , Locomoción/fisiología , Plexo Lumbosacro/fisiología , Neuronas Motoras/fisiología , Red Nerviosa/fisiología , Médula Espinal/fisiología , Potenciales de Acción/fisiología , Adaptación Fisiológica/fisiología , Animales , Gatos , Marcha/fisiologíaRESUMEN
UNLABELLED: Stroke survivors often have upper limb (UL) hemiparesis, limiting their ability to perform activities of daily life (ADLs). Intensive, task-oriented exercise therapy (ET) can improve UL function, but motivation to perform sufficient ET is difficult to maintain. Here, we report on a trial in which a workstation was deployed in the homes of chronic stroke survivors to enable tele-coaching of ET in the guise of computer games. Participants performed six weeks of 1 h/day, five days/week ET. Hand opening and grasp were assisted with functional electrical stimulation (FES). The primary outcome measure was the Action Research Arm Test (ARAT). Secondary outcome measures included a quantitative test of UL function performed on the workstation, grasp force measurements and transcranial magnetic stimulation (TMS). Improvements were seen in the functional tests, but surprisingly, not in the TMS responses. An important finding was that participants commencing with intermediate functional scores improved the most. CONCLUSIONS: (1) Daily, tele-supervised FES-ET in chronic stroke survivors is feasible with commercially-available technology. (2) The intervention can significantly improve UL function, particularly in people who start with an intermediate level of function. (3) Significant improvements in UL function can occur in the absence of changes in TMS responses.
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Terapia por Estimulación Eléctrica/instrumentación , Hemiplejía/terapia , Accidente Cerebrovascular/terapia , Telemedicina/instrumentación , Extremidad Superior/fisiopatología , Juegos de Video , Anciano , Anciano de 80 o más Años , Diseño de Equipo , Análisis de Falla de Equipo , Terapia por Ejercicio , Femenino , Hemiplejía/diagnóstico , Hemiplejía/etiología , Humanos , Masculino , Persona de Mediana Edad , Accidente Cerebrovascular/complicaciones , Accidente Cerebrovascular/diagnóstico , Terapia Asistida por Computador/instrumentación , Resultado del TratamientoRESUMEN
The Rehabilitation Joystick for Computerized Exercise (ReJoyce, Rehabtronics Inc., Edmonton, Alberta, Canada), is a workstation on which participants exercise dexterous movement tasks in the guise of computer games. The system incorporates the ReJoyce Arm and Hand Function Test (RAHFT). Here the authors evaluate the RAHFT against the Action Research Arm Test (ARAT) and the Fugl-Meyer Assessment (FMA). All 3 tests were performed in 36 separate sessions in 13 tetraplegic individuals. Concurrent and criterion validities of the RAHFT were supported by a high level of correlation with the ARAT (r2 = .88). Regarding responsiveness, the effect size of the RAHFT at week 6 of 1 hr/day exercise training was 1.8. Regarding reliability, the mean test-retest difference in RAHFT baseline scores was 0.67% ± 3.6%, which was not statistically significant. The RAHFT showed less ceiling effect than either ARAT or FMA. These data help validate the RAHFT as a quantitative, automated alternative to the ARAT and FMA. The RAHFT is the first comprehensive test of arm and dexterous hand function that does not depend on human judgment. It offers a standardized, quantitative outcome evaluation, which can be performed not only in the clinic, but also in the participant's home, administered by a remote therapist over the Internet.
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Evaluación de la Discapacidad , Rehabilitación Neurológica/métodos , Cuadriplejía/diagnóstico , Recuperación de la Función , Extremidad Superior/fisiología , Extremidad Superior/fisiopatología , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Rehabilitación Neurológica/instrumentación , Cuadriplejía/fisiopatología , Cuadriplejía/rehabilitación , Reproducibilidad de los Resultados , Juegos de Video , Adulto JovenRESUMEN
The single pellet grasping (SPG) task is a skilled forelimb motor task commonly used to evaluate reaching and grasp kinematics and recovery of forelimb function in rodent models of CNS injuries and diseases. To train rats in the SPG task, the animals are usually food restricted then placed in an SPG task enclosure and presented food pellets on a platform located beyond a slit located at the front of the task enclosure for 10-30 min, normally every weekday for several weeks. When the SPG task is applied in studies involving various experimental groups, training quickly becomes labor intensive, and can yield results with significant day-to-day variability. Furthermore, training is frequently done during the animals' light-cycle, which for nocturnal rodents such as mice and rats could affect performance. Here we describe an automated pellet presentation (APP) robotic system to train and test rats in the SPG task that reduces some of the procedural weaknesses of manual training. We found that APP trained rats performed significantly more trials per 24 h period, and had higher success rates with less daily and weekly variability than manually trained rats. Moreover, the results show that success rates are positively correlated with the number of dark-cycle trials, suggesting that dark-cycle training has a positive effect on success rates. These results demonstrate that automated training is an effective method for evaluating and training skilled reaching performance of rats, opening up the possibility for new approaches to investigating the role of motor systems in enabling skilled forelimb use and new approaches to investigating rehabilitation following CNS injury.
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Alimentos , Miembro Anterior/fisiología , Fuerza de la Mano/fisiología , Destreza Motora/fisiología , Condicionamiento Físico Animal/fisiología , Animales , Femenino , Pruebas Neuropsicológicas , Ratas , Ratas Endogámicas Lew , RobóticaRESUMEN
BACKGROUND: . More than 150 000 neuroprostheses (NPs) have been implanted in people to restore bodily function in a variety of neural disorders. The authors developed a novel NP, the Stimulus Router System (SRS), in which only passive leads are implanted. Each lead picks up a portion of the current delivered through the skin by an external stimulator. OBJECTIVE: . The authors report on the first human implant of an SRS. METHODS: . The recipient was a tetraplegic man with bilateral hand paralysis. Three SRS leads were implanted in his right forearm to activate the finger extensors, finger flexors, and thumb flexor. A wristlet containing a surface stimulator and electrodes was used to pass trains of electrical pulses through the skin to each lead. Hand opening and grasp were controlled via a wireless earpiece that sensed small tooth-clicks and transmitted signals to the wristlet. RESULTS: . The current required to activate the muscles was less than half that required prior to implantation and below perceptual threshold. Maximal grip force and hand opening aperture were both larger using the SRS. The implanted leads have remained functional for 3 years. The recipient reported various tasks of daily life that improved during SRS usage. An electronic counter revealed mean monthly usage of 18.5 hours, equivalent to 55 hours of continuous manual activity. CONCLUSIONS: . This first implant of the SRS indicates that it can be effective and reliable and has potential to provide an alternative to existing NPs.
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Terapia por Estimulación Eléctrica/instrumentación , Terapia por Estimulación Eléctrica/métodos , Electrodos Implantados , Fuerza de la Mano/fisiología , Cuadriplejía/terapia , Traumatismos de la Médula Espinal/terapia , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Actividad Motora , Músculo Esquelético/inervación , Músculo Esquelético/fisiología , Cuadriplejía/etiología , Traumatismos de la Médula Espinal/fisiopatología , Muñeca/inervaciónRESUMEN
Stroke survivors with hemiparesis and spinal cord injury (SCI) survivors with tetraplegia find it difficult or impossible to perform many activities of daily life. There is growing evidence that intensive exercise therapy, especially when supplemented with functional electrical stimulation (FES), can improve upper extremity function, but delivering the treatment can be costly, particularly after recipients leave rehabilitation facilities. Recently, there has been a growing level of interest among researchers and healthcare policymakers to deliver upper extremity treatments to people in their homes using in-home teletherapy (IHT). The few studies that have been carried out so far have encountered a variety of logistical and technical problems, not least the difficulty of conducting properly controlled and blinded protocols that satisfy the requirements of high-level evidence-based research. In most cases, the equipment and communications technology were not designed for individuals with upper extremity disability. It is clear that exercise therapy combined with interventions such as FES, supervised over the Internet, will soon be adopted worldwide in one form or another. Therefore it is timely that researchers, clinicians, and healthcare planners interested in assessing IHT be aware of the pros and cons of the new technology and the factors involved in designing appropriate studies of it. It is crucial to understand the technical barriers, the role of telesupervisors, the motor improvements that participants can reasonably expect and the process of optimizing IHT-exercise therapy protocols to maximize the benefits of the emerging technology.
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Terapia por Ejercicio/métodos , Cuadriplejía/rehabilitación , Recuperación de la Función/fisiología , Traumatismos de la Médula Espinal/rehabilitación , Rehabilitación de Accidente Cerebrovascular , Extremidad Superior/fisiopatología , Terapia por Estimulación Eléctrica/instrumentación , Terapia por Estimulación Eléctrica/métodos , Humanos , Cuadriplejía/fisiopatología , Traumatismos de la Médula Espinal/fisiopatología , Traumatismos de la Médula Espinal/terapia , Accidente Cerebrovascular/fisiopatología , Accidente Cerebrovascular/terapia , Resultado del TratamientoRESUMEN
BACKGROUND: Spinal cord injury (SCI) survivors with tetraplegia have great difficulty performing activities of daily living (ADLs). Functional electrical stimulation (FES) combined with exercise therapy (ET) can improve hand function, but delivering the treatment is problematic. OBJECTIVE: To compare 2 ET treatments delivered by in-home tele-therapy (IHT). METHODS: Each treatment involved ET, tele-supervised 1 h/d, 5 d/wk for 6 weeks. Treatment 1: "conventional ET" comprised strength training, computer games played with a trackball, and therapeutic electrical stimulation (TES). Treatment 2: "ReJoyce ET" comprised FES-ET on a workstation, the Rehabilitation Joystick for Computerized Exercise (ReJoyce) with which participants played computer games associated with ADLs. Participants were block-randomized into group 1 receiving conventional ET first, followed by 1-month washout, and then ReJoyce ET and group 2 in reverse order. In all, 13 participants took part, 5 completing the study with both hands, such that both groups had a sample size of 9. PRIMARY OUTCOME MEASURE: Action Research Arm Test (ARAT). SECONDARY OUTCOME MEASURES: grasp and pinch forces and the ReJoyce automated hand function test (RAHFT). RESULTS: ARAT scores improved more after ReJoyce ET (13.0% ± 9.8%) than after conventional ET (4.0% ± 9.6%; F = 10.6, P < .01). RAHFT scores also improved more after ReJoyce ET (16.9% ± 8.6%) than conventional ET (3.3% ± 10.2%; F = 20.4, P < .01). CONCLUSIONS: FES-ET on a workstation, supervised over the Internet, is feasible and may be effective for patients who can meet the residual motor function requirements of our study.
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Cuadriplejía/fisiopatología , Cuadriplejía/rehabilitación , Telemedicina , Adulto , Periféricos de Computador , Estudios Cruzados , Terapia por Estimulación Eléctrica , Terapia por Ejercicio , Estudios de Factibilidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Método Simple Ciego , Terapia Asistida por Computador , Resultado del Tratamiento , Juegos de Video , Adulto JovenRESUMEN
Neuroprostheses (NPs) are electrical stimulators that help to restore sensory or motor functions lost as a result of neural damage. The Stimulus Router System (SRS) is a new type of NP developed in our laboratory. The system uses fully implanted, passive leads to "capture" and "route" some of the current flowing between pairs of surface electrodes to the vicinity of the target nerves, hence eliminating the need for an implanted stimulator. In June 2008, 3 SRS leads were implanted in a tetraplegic man for restoration of grasp and release. To reduce the size of the external wristlet and thereby optimize usability, we recently implemented a polarity reversing stimulation technique that allowed us to eliminate a reference electrode. Selective activation of three target muscles was achieved by switching the polarities of the stimulus current delivered between pairs of surface electrodes located over the pick-up terminals of the implanted leads and reducing the amplitude of the secondary phases of the stimulus pulses.
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Electrodos Implantados , Prótesis e Implantes , HumanosRESUMEN
Many laboratories have reported the successful regeneration of neurons across damaged portions of the spinal cord. Associated improvements in hindlimb locomotor movements have been attributed to the formation of functional neuronal connections with the locomotor central pattern generator (CPG). However, regenerating axons generally extend no more than 10 mm caudal to the lesion sites, terminating about 20 mm short of the lumbar segments thought to contain the CPG. It has therefore tacitly been assumed that the locomotor improvements arose from activation of propriospinal neurons relaying excitation to the CPG. Here we report a test of this assumption, which we call the propriospinal hypothesis. Intraspinal microstimulation (ISMS) was used to activate the putative propriospinal relay neurons. Approximately 2-3 wk after complete spinal cord transection at T8-T9 in rats, an array of six Pt-Ir microwires was chronically implanted in the intermediate and ventral gray matter of T10-T12 segments. ISMS pulse trains with amplitudes of 0.8-0.9 times threshold for activating axial muscles were delivered during open-field locomotor tests (BBB). ISMS significantly increased BBB scores over control tests, but did not produce limb coordination and weight bearing sufficient for locomotion. These results support the main assumption of the propriospinal hypothesis: that neuronal activity elicited in thoracic spinal segments caudal to a complete spinal cord transection may propagate caudally and activate the locomotor CPG.
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Estimulación Eléctrica , Traumatismos de la Médula Espinal/cirugía , Médula Espinal/efectos de la radiación , Animales , Conducta Animal , Modelos Animales de Enfermedad , Femenino , Implantes Experimentales , Locomoción/fisiología , Locomoción/efectos de la radiación , Actividad Motora/fisiología , Actividad Motora/efectos de la radiación , Ratas , Ratas Sprague-Dawley , Índice de Severidad de la Enfermedad , Médula Espinal/fisiopatologíaRESUMEN
OBJECTIVE: To test the efficacy of functional electric stimulation (FES)-assisted exercise therapy (FES-ET) on a workstation in the subacute phase of recovery from a stroke. DESIGN: Single-blind, randomly controlled comparison of high- and low-intensity treatment. SETTING: Laboratory in a rehabilitation hospital. PARTICIPANTS: Nineteen stroke survivors (10 men, 9 women; mean age +/- standard deviation, 60.6+/-5.8y), with upper-extremity hemiplegia (mean poststroke time, 48+/-17d). The main inclusion criteria were: stroke occurred within 3 months of onset of trial and resulted in severe upper-limb dysfunction, and FES produced adequate hand opening. INTERVENTION: An FES stimulator and an exercise workstation with instrumented objects were used by 2 groups to perform specific motor tasks with their affected upper extremity. Ten subjects in the high-intensity FES-ET group received FES-ET for 1 hour a day on 15 to 20 consecutive workdays. Nine subjects in the low-intensity FES-ET group received 15 minutes of sensory electric stimulation 4 days a week and on the fifth day they received 1 hour of FES-ET. MAIN OUTCOME MEASURES: Primary outcome measure included the Wolf Motor Function Test (WMFT). Secondary outcome measures included the Motor Activity Log (MAL), the upper-extremity portion of the Fugl-Meyer Assessment (FMA), and the combined kinematic score (CKS) derived from workstation measurements. The WMFT, MAL, and FMA were used to assess function in the absence of FES whereas CKS was used to evaluate function assisted by FES. RESULTS: Improvements in the WMFT and CKS were significantly greater in the high-intensity group (post-treatment effect size, .95) than the low-intensity group (post-treatment effect size, 1.3). The differences in MAL and FMA were not statistically significant. CONCLUSIONS: Subjects performing high-intensity FES-ET showed significantly greater improvements on the WMFT than those performing low-intensity FES-ET. However, this was not reflected in subjects' self-assessments (MAL) or in their FMA scores, so the clinical significance of the result is open to debate. The CKS data suggest that high-intensity FES-ET may be advantageous in neuroprosthetic applications.