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1.
Epilepsia ; 65(7): 1975-1988, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38624142

RESUMEN

OBJECTIVES: To evaluate the efficacy of a specialized inpatient rehabilitation program in patients with newly diagnosed epilepsy (NDE), who had been referred within 1 year after diagnosis. METHODS: We performed an open, prospective, controlled study comparing a 1-year follow-up assessment of patients with NDE after completing a rehabilitation program at an epilepsy center (rehabilitation group) with a control group of patients with similar epilepsy duration, but without rehabilitation in the first year after diagnosis. Primary outcome measures comprised emotional adaptation to epilepsy, depression and anxiety; and secondary outcome measures were overall quality of life (QoL), overall health, perceived restrictions because of epilepsy, level of information about epilepsy, and employment status. RESULTS: Comparison of the admission data of 74 rehabilitation group patients (mean age and SD 47.7 ± 13.0 years) with the pre-rehabilitation assessment of 56 control patients (45.5 ± 12.1 years) revealed no significant differences concerning sociodemographic and health data. Comparison of the follow-up assessment of the rehabilitation group and the pre-rehabilitation assessment of the control group showed significantly better values for the rehabilitation group on emotional adaptation to epilepsy (p = .003), overall QoL (p = .006) and overall health (p = .011), perceived restrictions because of epilepsy, and subjective level of information about epilepsy (both p's < .001). There were no statistically significant differences concerning depression and anxiety or employment status (all p's > .50). One year after rehabilitation, patients in the rehabilitation group were more often seizure-free and less often on sickness absence than control group patients (both p's < .001). SIGNIFICANCE: Since reduced QoL shortly after diagnosis of NDE is associated with seizure recurrence, an early identification of patients with a greater need for support seems important. This epilepsy-related rehabilitation program showed lasting effects on several aspects of adaptation to epilepsy and QoL.


Asunto(s)
Epilepsia , Calidad de Vida , Humanos , Femenino , Masculino , Persona de Mediana Edad , Adulto , Epilepsia/rehabilitación , Epilepsia/psicología , Epilepsia/diagnóstico , Estudios de Seguimiento , Calidad de Vida/psicología , Estudios Prospectivos , Pacientes Internos/estadística & datos numéricos , Pacientes Internos/psicología , Resultado del Tratamiento , Adaptación Psicológica , Depresión/psicología
2.
Curr Sports Med Rep ; 20(1): 26-30, 2021 Jan 01.
Artículo en Inglés | MEDLINE | ID: mdl-33395128

RESUMEN

ABSTRACT: Persons with epilepsy have traditionally been restricted from physical exercise and sports participation because of misinformation and fear. The physical and psychosocial benefits of exercise on general health are well known and have been denied to persons with epilepsy because of these restrictions. Exercise has been shown to decrease seizure frequency and has even been assessed as a means to prevent epilepsy. The risk of injury is a commonly cited reason for restricting physical activity although the majority of these injuries are soft tissue injuries. Literature has shown that the benefits of sports participation for persons with epilepsy far outweigh the risk to the participant. While there are recommended contraindications to a small number of sports, persons with epilepsy can safely participate in the majority of sports with correct counseling and observation.


Asunto(s)
Actitud Frente a la Salud , Epilepsia/rehabilitación , Ejercicio Físico , Deportes , Comunicación , Humanos , Seguridad del Paciente , Estereotipo
3.
Epilepsy Behav ; 113: 107552, 2020 12.
Artículo en Inglés | MEDLINE | ID: mdl-33242775

RESUMEN

BACKGROUND: MINDSET, a bilingual (Eng./Span.) decision support tool was found feasible for facilitating goal-based epilepsy self-management (ESM) in the clinic. PURPOSE: To evaluate the efficacy of MINDSET to increase ESM adherence among Hispanic patients. METHODS: A RCT was conducted from August 2017 through January 2019. Spanish and English speaking Hispanic adult patients (n=94) with epilepsy in Arizona (n=53) and Texas (n=41) were randomly assigned within 6 neurology clinics to treatment (MINDSET plus Usual Care, hereafter referred to as MINDSET; n=46) and comparison (Usual Care Only; n=48) conditions. Self-reported self-management behavior (assessed through the Epilepsy Self-management scale) were categorized as adherent if performed 'usually' or 'always.' The proportion of adherence was compared between study conditions for 36 individual ESM behaviors and 5 ESM domains using Fischer's exact test. RESULTS: The average time between visit 1 through 3 was 350+/-79 days with retention at 96.8%. Participants in the treatment condition had more college education and less unemployment. Self-management adherence improved across visits for all self-management behaviors irrespective of study condition. Compared to usual care MINDSET use led to greater ESM adherence for 86.1% behaviors (5 with statistical significance; p<0.05) and to significant improvement in the ESM domain of 'information management' (p<0.05). CONCLUSIONS: Implementation of MINDSET within regular neurology visits may assist Hispanic adults with epilepsy to increase their adherence to ESM behaviors and maintain this adherence longitudinally. Replication with a broader demographic population of people with epilepsy is indicated.


Asunto(s)
Sistemas de Apoyo a Decisiones Clínicas , Epilepsia/rehabilitación , Cooperación del Paciente , Automanejo/métodos , Adulto , Arizona , Femenino , Humanos , Masculino , Persona de Mediana Edad , Texas
4.
Epilepsia ; 61(8): 1649-1658, 2020 08.
Artículo en Inglés | MEDLINE | ID: mdl-32602966

RESUMEN

OBJECTIVE: To examine the effect of 12-week exercise program on cognitive function in people with epilepsy. METHODS: Twenty-one physically inactive subjects were randomized into two groups: the exercise group (EG) or the control group (CG). EG performed 12 weeks of combined physical training. CG was advised to maintain usual daily activities. EG received a structured, individually supervised exercise program with two 60-minute sessions per week. Each session included warmup (5-minutes), aerobic (15-20 minutes at 14-17 on Borg scale), strength (2-3 sets, 10-15 repetitions), and 5-minute active stretches. Sociodemographic characteristics, clinical information, memory (Digit Span Test [DST]), executive function (Trail Making Test [TMT] A and B), Stroop Color and Word Test, a verbal fluency task, global cognitive function (Montreal Cognitive Assessment [MoCA]), anthropometric measurements (weight, height, and hip and waist circumferences), cardiorespiratory fitness (maximal oxygen consumption [VO2 max]), and strength (dynamometer) were measured at baseline and after the 12-week intervention. RESULTS: Exercise decreased time spent on TMT-A from baseline to postintervention (difference = -7.9 seconds, 95% confidence interval [CI] = -14.5 to -1.3, P = .023). EG improved total number of words on the verbal fluency task after intervention (difference = 8.1 words, 95% CI = 3.0 to 13.2, P = .002). EG also improved the score on MoCA at 1.7 (95% CI = 0.1 to 3.3, P = .043) points. We observed a 22.4% (95% CI = 13.1 to 31.6, P = .021) improvement in executive function in EG. No effect of group, time, or group × time was observed on any other cognitive test. Changes in VO2 max were negatively associated with changes in performance on DST (r = -.445, P = .049) and overall memory score (r = -.544, P = .042). SIGNIFICANCE: This randomized controlled trial provided the first evidence that combined physical training improves executive function in adults with epilepsy, showing main improvements in attention and language tasks. Physical exercise should be encouraged for people with epilepsy to reduce the burden on cognitive function associated with this disease.


Asunto(s)
Atención , Cognición , Epilepsia/rehabilitación , Función Ejecutiva , Terapia por Ejercicio/métodos , Memoria , Adulto , Anticonvulsivantes/uso terapéutico , Epilepsia/tratamiento farmacológico , Epilepsia/fisiopatología , Epilepsia/psicología , Ejercicio Físico , Femenino , Humanos , Masculino , Pruebas de Estado Mental y Demencia , Fuerza Muscular , Ejercicios de Estiramiento Muscular , Pruebas Neuropsicológicas , Consumo de Oxígeno , Aptitud Física , Método Simple Ciego , Test de Stroop , Prueba de Secuencia Alfanumérica , Resultado del Tratamiento , Ejercicio de Calentamiento
5.
Epilepsy Behav ; 104(Pt A): 106891, 2020 03.
Artículo en Inglés | MEDLINE | ID: mdl-31931460

RESUMEN

BACKGROUND: Physiotherapists play a key role in the rehabilitation of children with epileptic seizures. Regular physical exercise generates psychological and physiological benefits for people with epilepsy. DESIGN: This study was a cross-sectional design. PURPOSE: The purpose of this study was to evaluate the knowledge and current practices of physiotherapists on the physical activity and exercise in the rehabilitation of children with epileptic seizures in Nigeria. METHODS: Physiotherapists with minimum bachelor's degrees were invited to participate in the study using an electronic questionnaire. The subjects (N = 117) answered a questionnaire comprising 33 simple closed-ended questions with three domains: personal information, knowledge, and current practices. RESULTS: Out of the 117 physiotherapists, 77.7% (n = 91) had postgraduate degrees, 16.2% (n = 19) had bachelor's degree in physiotherapy, and only 5.9% (n = 7) had Doctor of Physical Therapy (DPT). The results also indicated that 79.5% (n = 93) of physiotherapists had sufficient knowledge about epilepsy, and 86.3% (n = 101) of physiotherapists were using current skills/physical activity to rehabilitate children with epileptic seizures. CONCLUSIONS: It was concluded that physiotherapists had sufficient knowledge about epilepsy and were using current skills/physical activity in the rehabilitation of children with epileptic seizures.


Asunto(s)
Epilepsia/rehabilitación , Terapia por Ejercicio/normas , Ejercicio Físico/fisiología , Conocimientos, Actitudes y Práctica en Salud , Fisioterapeutas/normas , Convulsiones/rehabilitación , Adulto , Estudios Transversales , Epilepsia/epidemiología , Epilepsia/psicología , Ejercicio Físico/psicología , Terapia por Ejercicio/métodos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Nigeria/epidemiología , Fisioterapeutas/psicología , Modalidades de Fisioterapia/normas , Convulsiones/epidemiología , Convulsiones/psicología , Encuestas y Cuestionarios , Adulto Joven
6.
Epilepsy Behav ; 104(Pt A): 106898, 2020 03.
Artículo en Inglés | MEDLINE | ID: mdl-31986442

RESUMEN

INTRODUCTION: The reason why some children and adolescent with epilepsy (CAWE) still challenge the "inclusive" educative policy needs to be explored. METHODS/PATIENTS: We conducted a transversal study in French medical, social, and educative rehab centers (MSERCs) dedicated to CAWE to describe the profile of 263 centers-involved (CI)-CAWE. Centers-involved CAWE were prospectively followed from September 2012 to August 2013. Medical, social, and educative rehab centers were dichotomized according to their care-provider agreement (i.e., CAWE of "moderate" (M) vs. "severe" (S) conditions). Clinical factors known to impact clinical outcome and quality of life (QoL) in epilepsy and four disabling conditions at risk to impact school life (i.e., cognitive and psychiatric/behavioral disorders, risk of physical hazards (i.e., refractory seizures with unpredictable loss of tone and/or awareness), and one or more seizure/week) were evaluated. The electronic chart of the French collaborative database (namely GRENAT) was used for data collection allowing comparison with the profile of 731 "normally integrated and schooled" (NIS)-CAWE extracted from GRENAT and matching for generation (i.e., born between 1988 and 2006). RESULTS: Centers-involved CAWE's profile was found, after adjustment, to be associated with clinical factors and disabling conditions reflecting the poorest clinical outcome and health-related quality of life (HR-QoL) (all p < 0.001). A cutoff of two disabilities/child highly discriminated NIS-CAWE vs. CI-CAWE. Centers-involved CAWE of S-MSERCs were the most severe (all p < 0.001), and the type of cognitive disability (i.e., intellectual disability (ID) vs. specific learning disorders (SLD)) highly paralleled the types of MSERCs (S vs. M). Using a parent-informant questionnaire, the number of disabilities/child was found to correlate with both the evaluation of the impact of epilepsy (r = 0.47, p < 0.001) and the HR-QoL (r = 0.37, p < 0.001). A satisfactory social life was reported (83.8%) even after S vs. M dichotomization (77.2% vs. 94.7%; p < 0.001). CONCLUSION: Multiple disabilities rather than epilepsy per se challenge the inclusive educative policy. Evaluation of disabilities could be the missing bridge to optimize this policy and understand its limits.


Asunto(s)
Epilepsia/psicología , Epilepsia/rehabilitación , Centros de Rehabilitación , Adolescente , Adulto , Niño , Estudios de Cohortes , Epilepsia/epidemiología , Femenino , Francia/epidemiología , Humanos , Masculino , Estudios Prospectivos , Calidad de Vida/psicología , Encuestas y Cuestionarios , Adulto Joven
7.
Epilepsy Behav ; 103(Pt A): 106386, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31645316

RESUMEN

Neurobehavioral comorbidities, particularly attention-deficits, are common in children with epilepsy (CWE). Neurobehavioral problems are manifested in school performance, peer relations, and social competence. Although the high prevalence of these comorbid behavioral problems is fully recognized, there remains to be a lack of studies on the interventions targeted for CWE. A manualized neuropsychological group intervention, Rehabilitation of EXecutive Function and ATtention (EXAT) has been developed for school-aged children (aged 6-12 years) with executive function (EF) and attention-deficits. This study aimed to explore the effects of EXAT on parent- and teacher-rated attention and behavior problems in CWE compared with children with the diagnosis of attention-deficit hyperactivity disorder (ADHD) and children with no formal diagnosis but prominent deficits in EF and attention. Forty-two children attending in neuropsychological group rehabilitation EXAT between the years 2006 and 2017 participated in this retrospective registry study. The CWE group consisted of 11 children, the ADHD group with 16 children, and EF/attention group consisted of 15 children with EF attention and/or problems without diagnosis of ADHD. The CWE group did not differ from the other two study groups (ADHD and no formal diagnosis) before the EXAT intervention. This indicates that attention problems in CWE are similar to those with diagnosed ADHD. The results were promising for applying structured multilevel intervention for CWE and neurobehavioral comorbidities. Lack of group differences between the groups participating EXAT suggests similar intervention effects between CWE, ADHD, and those with less severe EF and attention problems. In parent ratings, intervention effects were higher in hyperactivity and oppositional behavior for children with attention problems and without epilepsy. Parents in the CWE group reported no effects except for one subscale related to hyperactivity. However, teachers reported consistently positive intervention effects for both inattention and hyperactivity-impulsivity along with anxiety and emotional lability. The results suggest that neurobehavioral comorbidities in CWE could be targeted in neuropsychological group intervention. In conclusion, CWE seem to benefit from interventions and behavior modification techniques first developed for children with ADHD.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad/rehabilitación , Terapia Conductista , Trastornos de la Conducta Infantil/rehabilitación , Disfunción Cognitiva/rehabilitación , Epilepsia/rehabilitación , Psicoterapia de Grupo , Sistema de Registros , Adolescente , Trastorno por Déficit de Atención con Hiperactividad/epidemiología , Niño , Trastornos de la Conducta Infantil/epidemiología , Disfunción Cognitiva/epidemiología , Remediación Cognitiva , Comorbilidad , Epilepsia/epidemiología , Femenino , Humanos , Masculino , Estudios Retrospectivos
8.
Epilepsy Behav ; 102: 106698, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31785487

RESUMEN

Specialized vocational rehabilitation (VR) programs in epilepsy have routinely performed more successfully than general or state-federal VR programs. This article presents the key areas of emphasis in successful epilepsy VR program development to include initial program drivers, choice of VR services model, perspectives on program elements, clients, staffing, service evaluation metrics, operational considerations, and the partnering sponsor's personnel support. Considerable emphasis is placed on the importance and diversity of funding in sustaining a specialized epilepsy VR program. This template of considerations provides potential program implementers with a general framework for successful epilepsy VR program development.


Asunto(s)
Empleo/métodos , Epilepsia/rehabilitación , Desarrollo de Programa/métodos , Rehabilitación Vocacional/métodos , Empleo/economía , Empleo/psicología , Epilepsia/economía , Epilepsia/psicología , Humanos , Desarrollo de Programa/economía , Rehabilitación Vocacional/economía , Rehabilitación Vocacional/psicología
9.
Psychiatr Danub ; 31(Suppl 3): 467-474, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31488774

RESUMEN

Music is a very important factor in everyday life, involving mood, emotions and memories. The effect of music on the brain is very debated. Certainly, music activates a complex network of neurones in auditory areas, mesolimbic areas, cerebellum and multisensory areas. In particular, music exerts its effects on the brain of patients with epilepsy, having a dichotomous influence: it can either be seizure-promoting in musicogenic epilepsy or antiepileptic. Several studies have shown that seizure-prone neural networks may be stimulated by certain periodicities while other frequencies may prevent seizure activity. There are a lot of data in the literature about the so-called "Mozart effect" (Rauscher et al. 1993). In previous studies we observed that in institutionalized subjects with severe/profound intellectual disability and drug-resistant epilepsy, a systematic music listening protocol reduced the frequency of seizures in about 50% of the cases. In this study we are conducting a survey on the observation of what happens to the brain of patients suffering from drug-resistant epilepsy through electroencephalographic investigations, brain MRI and behavioural analysis before and after six months of listening to Mozart music (Sonata K.448). The first step is to present the data of the first patient under investigation.


Asunto(s)
Epilepsia/fisiopatología , Epilepsia/rehabilitación , Musicoterapia , Música/psicología , Convulsiones/prevención & control , Convulsiones/fisiopatología , Estimulación Acústica , Mapeo Encefálico , Electroencefalografía , Epilepsia/complicaciones , Humanos , Convulsiones/complicaciones
10.
Dev Med Child Neurol ; 61(2): 226-231, 2019 02.
Artículo en Inglés | MEDLINE | ID: mdl-30194703

RESUMEN

AIM: To examine key outcomes in the education of young people with and without neurodisabilities, and to investigate additional disparities in educational achievement in relation to socio-economic background. METHOD: Data were collected on 2488 Canadian children (age range 10-11y) in 1994 and 1995 from the National Longitudinal Survey of Children and Youth whom were followed for 14 years. We performed separate, discrete-time survival analysis to investigate the effects of having a neurodisability on high school completion, enrolment in post-secondary education (PSE), and PSE completion. RESULTS: The baseline prevalence of neurodisabilities was 12%. Fewer children with neurodisabilities completed high school or enrolled in PSE, compared to children without neurodisabilities, irrespective of parental education. The likelihood that students with neurodisabilities completed PSE differed according to their parents' education: students with neurodisabilities living in less-educated families were about half as likely to complete PSE themselves. INTERPRETATION: Children with neurodisabilities receive less education than children without neurodisabilities. Children from families with low educational attainment appear to be particularly vulnerable. WHAT THIS PAPER ADDS: Twelve per cent of children in Canada aged 10 years to 11 years have a neurodisability. High school completion rate was 70% for children with neurodisabilities versus 94% for children without neurodisabilities. Children with neurodisabilities from less-educated families are particularly vulnerable to lower educational achievement.


Asunto(s)
Parálisis Cerebral/rehabilitación , Discapacidades del Desarrollo/rehabilitación , Personas con Discapacidad/educación , Intervención Educativa Precoz , Epilepsia/rehabilitación , Discapacidades para el Aprendizaje/rehabilitación , Adulto , Canadá/epidemiología , Parálisis Cerebral/psicología , Discapacidades del Desarrollo/psicología , Epilepsia/psicología , Femenino , Disparidades en Atención de Salud , Humanos , Discapacidades para el Aprendizaje/psicología , Estudios Longitudinales , Masculino , Encuestas y Cuestionarios , Adulto Joven
11.
Appl Neuropsychol Child ; 8(4): 326-332, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30295544

RESUMEN

Social competence is often impaired in children with acquired brain injury (ABI), but evidence-based rehabilitation has remained undeveloped. This pilot-study aimed to create a structured model for sociocognitive rehabilitation for children with ABI. A total of 32 children aged 8-13 years participated: 22 with ABI -epilepsy, traumatic brain injury, or tic disorder and 10 healthy controls. Interactive computer-based applications were implemented into rehabilitation design using multitouch-multiuser tabletop (MMT) devices: Snowflake MultiTeach (MT) and Diamond Touch Table (DTT), plus MediqVR virtual reality (VR) platform. At baseline, patients demonstrated social incompetence compared to healthy controls. Post-training evaluations showed that rehabilitation on Snowflake MT improved children's executive and cooperation skills. DTT developed new communication and language skills, metacognitive skills, and coping with difficult social situations. This structured model for social competence rehabilitation helps therapists to understand the objectives and tools for improving social and cooperation skills in children with ABI. We provide practical recommendations using next-generation devices, which are effective and motivating for children.


Asunto(s)
Lesiones Traumáticas del Encéfalo/rehabilitación , Disfunción Cognitiva/rehabilitación , Remediación Cognitiva , Epilepsia/rehabilitación , Rehabilitación Neurológica , Habilidades Sociales , Terapia Asistida por Computador , Trastornos de Tic/rehabilitación , Adolescente , Lesiones Traumáticas del Encéfalo/complicaciones , Niño , Disfunción Cognitiva/etiología , Remediación Cognitiva/instrumentación , Remediación Cognitiva/métodos , Epilepsia/complicaciones , Femenino , Humanos , Masculino , Rehabilitación Neurológica/instrumentación , Rehabilitación Neurológica/métodos , Evaluación de Procesos y Resultados en Atención de Salud , Proyectos Piloto , Terapia Asistida por Computador/instrumentación , Terapia Asistida por Computador/métodos , Trastornos de Tic/complicaciones , Realidad Virtual
12.
Epilepsy Behav ; 89: 153-158, 2018 12.
Artículo en Inglés | MEDLINE | ID: mdl-30415138

RESUMEN

Approximately 50% of patients diagnosed with epilepsy in childhood will need treatment in adulthood. Transition from pediatric to adult epilepsy care is challenging, and an unsuccessful transition can have detrimental effects. Researchers emphasize the importance of addressing possible barriers to transition in a multidisciplinary setting. In this paper, we describe a transition program implemented in a Level 4 epilepsy center in the Midwest. This program involves a psychosocial multidisciplinary team including a pediatric neuropsychologist, pediatric psychologist, and social worker who meet jointly with patient and his/her caregiver(s) before and after the transition. The pretransition visit involves assessment of transition readiness, screening for neurobehavioral comorbidities, provision of education regarding epilepsy care during the transition period, goal-setting, and development of a portable summary. The posttransition visit revisits goals and provides additional individualized recommendations and/or referrals for intervention as clinically indicated. The goal of this program is to facilitate a smooth transition from pediatric to adult providers to ensure optimal epilepsy care and quality of life.


Asunto(s)
Prestación Integrada de Atención de Salud/organización & administración , Epilepsia/terapia , Rehabilitación Psiquiátrica/organización & administración , Transición a la Atención de Adultos/organización & administración , Adolescente , Adulto , Continuidad de la Atención al Paciente/organización & administración , Epilepsia/rehabilitación , Femenino , Humanos , Masculino , Evaluación de Programas y Proyectos de Salud , Calidad de Vida , Adulto Joven
13.
Epilepsy Behav ; 86: 116-123, 2018 09.
Artículo en Inglés | MEDLINE | ID: mdl-29997037

RESUMEN

INTRODUCTION: The consequences of having epilepsy seriously hamper the development of autonomy for youth with epilepsy (YWE) and limit their social participation. This study was designed to provide insight into the impact of epilepsy on autonomy and empowerment and to evaluate the use of the Skills for Growing Up (SGU-Epilepsy) communication tool in pediatric epileptic care. METHODS: A mixed methods design was used to examine the impact of epilepsy on autonomy and empowerment and to evaluate the feasibility and use of the SGU-Epilepsy. Six focus groups with YWE and their parents were organized (N = 27), and the benefits of the SGU-Epilepsy were evaluated (N = 72). RESULTS: Youth with epilepsy struggled with social participation. Beliefs of YWE and their parents on managing daily life and taking medication were not always similar. Parents worried about the passive attitude of YWE, but autonomy of YWE seemed to be constrained by parents. The SGU-Epilepsy seemed to be feasible. It facilitated the communication on development and empowerment although it was sometimes confronting for parents. Not all YWE were motivated to use and discuss the tool. In the evaluation, no differences in perceived autonomy and empowerment between YWE who used SGU-Epilepsy and received usual care appeared. CONCLUSION: On the short-term, a beneficial effect of using the SGU-Epilepsy on autonomy and empowerment for YWE and their parents was not shown. The SGU-Epilepsy seemed to be a feasible instrument, however, to address nonmedical issues during pediatric consultations.


Asunto(s)
Comunicación , Epilepsia/psicología , Epilepsia/rehabilitación , Autonomía Personal , Poder Psicológico , Adolescente , Niño , Femenino , Grupos Focales , Humanos , Masculino , Cumplimiento de la Medicación , Padres , Participación Social , Adulto Joven
14.
Epilepsy Res ; 145: 89-92, 2018 09.
Artículo en Inglés | MEDLINE | ID: mdl-29933145

RESUMEN

Heterozygous de novo or inherited pathogenic variants in the PCDH19 gene cause a spectrum of neurodevelopmental features including developmental delay and seizures. PCDH19 epilepsy was previously known as "epilepsy and mental retardation limited to females", since the condition almost exclusively affects females. It is hypothesized that the co-existence of two populations of neurons, some with and some without PCDH19 protein expression, results in pathologically abnormal interactions between these neurons, a mechanism also referred to as cellular interference. Consequently, PCDH19-related epilepsies are inherited in an atypical X-linked pattern, such that hemizygous, non-mosaic, 46,XY males are typically unaffected, while individuals with a disease-causing PCDH19 variant, mainly heterozygous females and mosaic males, are affected. As a corollary to this hypothesis, an individual with Klinefelter syndrome (KS) (47,XXY) who has a heterozygous disease-causing PCDH19 variant should develop PCDH19-related epilepsy. Here, we report such evidence: - a male child with KS and PCDH19-related epilepsy - supporting the PCDH19 cellular interference disease hypothesis.


Asunto(s)
Cadherinas/genética , Epilepsia/genética , Epilepsia/patología , Síndrome de Klinefelter/genética , Síndrome de Klinefelter/patología , Preescolar , Cromosomas Humanos X/genética , Epilepsia/complicaciones , Epilepsia/rehabilitación , Humanos , Síndrome de Klinefelter/complicaciones , Síndrome de Klinefelter/rehabilitación , Masculino , Protocadherinas
15.
BMC Health Serv Res ; 18(1): 497, 2018 06 27.
Artículo en Inglés | MEDLINE | ID: mdl-29945630

RESUMEN

BACKGROUND: Individuals with severe disability often require personal assistance and help from informal caregivers, in addition to conventional health care. The utilization of assistance dogs may decrease the need for health and social care and increase the independence of these individuals. Service and hearing dogs are trained to assist specific individuals and can be specialized to meet individual needs. The aim of this study was to describe and explore potential consequences for health-related quality of life, well-being and activity level, of having a certified service or hearing dog. METHODS: A longitudinal interventional study with a pre-post design was conducted. At inclusion, all participants in the study had a regular (untrained) companion dog. Data were collected before training of the dog started and three months after certification of the dog. Health-related quality of life was assessed with EQ-5D-3L, EQ-VAS and RAND-36. Well-being was measured with WHO-5 and self-esteem with the Rosenberg Self-Esteem Scale. In addition, questions were asked about physical activity and time spent away from home and on social activities. Subgroups were analyzed for physical service and diabetes alert dogs. RESULTS: Fifty-five owner-and-dog pairs completed the study (30 physical service dogs, 20 diabetes alert dogs, 2 epilepsy alert dogs, and 3 hearing dogs). Initially, study participants reported low health-related quality of life compared with the general population. At follow-up, health-related quality of life measured with the EQ-VAS, well-being and level of physical activity had improved significantly. In the subgroup analysis, physical service dog owners had lower health-related quality of life than diabetes alert dog owners. The improvement from baseline to follow-up measured with EQ-5D statistically differed between the subgroups. CONCLUSIONS: The target population for service and hearing dogs has an overall low health-related quality of life. Our study indicates that having a certified service or hearing dog may have positive impact on health-related quality of life, well-being and activity level. Service and hearing dogs are a potentially important "wagging tail aid" for this vulnerable population, able to alleviate strain, increase independence, and decrease the risk of social isolation. TRIAL REGISTRATION: The trial was retrospectively registered in http://clinicaltrial.gov , NCT03270592. September, 2017.


Asunto(s)
Personas con Discapacidad , Perros , Ejercicio Físico , Adolescente , Adulto , Anciano , Animales , Diabetes Mellitus/rehabilitación , Personas con Discapacidad/rehabilitación , Epilepsia/rehabilitación , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Calidad de Vida , Autoimagen , Conducta Social , Suecia , Adulto Joven
16.
Neuropsychol Rev ; 28(1): 88-110, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29450813

RESUMEN

Memory failure is a common clinical concern of patients with epilepsy and is associated with significant functional impairments. Thus, memory rehabilitation is of critical clinical importance. In this article, we aimed to systematically evaluate the efficacy of memory rehabilitation in patients with epilepsy. The Preferred Items for Systematic Reviews and Meta-Analyses (PRISMA) was used to guide searches, extraction and reporting of data in this review. PsycINFO, Medline and PsychBITE searches yielded 95 studies. Twelve papers met inclusion criteria, reporting outcomes of cognitive or behavioural interventions that specifically targeted the rehabilitation of memory in patients with epilepsy. Methodological rigour was rated using the Single-Case Experimental Design (SCED) scale for single-case studies and a modified version of the Downs and Black checklist for group studies. Twelve prospective studies, nine group (six pre-post design, one waitlist crossover, two randomised controlled trials) and three single-case studies were identified. Eleven of the studies included adults, eight of which involved adults with temporal lobe epilepsy (TLE). One paediatric study was identified. The quality of group studies ranged from 36% (poor) to 72% (good), using the modified Downs and Black checklist. Single-case studies were assessed using the SCED scale and assessed to range in quality from four to seven out to 11. Overall, memory rehabilitation was associated with improved memory function in all studies. Verbal memory outcomes were most commonly examined and associated with improvements. This review found that the level of evidence available to support rehabilitation of memory in patients with epilepsy was generally weak and inconsistent. Nevertheless, studies conducted to date, albeit of limited methodological quality, offer preliminary evidence that memory rehabilitation is associated with improvements in verbal memory in patients with temporal lobe epilepsy. Little is known about the efficacy of memory rehabilitation in patients with non-TLE, children, and other aspects of memory difficulties. Guidelines for future research are proposed.


Asunto(s)
Epilepsia/psicología , Epilepsia/rehabilitación , Memoria , Humanos
17.
Acta Neurol Scand ; 137(2): 188-194, 2018 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-28714112

RESUMEN

OBJECTIVES: Wearable sensors that measure movement and physiological variables are attractive for clinical evaluation of neurological diseases such as epilepsy and Parkinson's disease (PD). The aim of this study was to explore perceptions regarding the use of wearable technology in disease monitoring and management as reported by individuals with epilepsy and Parkinson's disease as well as health professionals working with these patient groups. MATERIALS AND METHODS: Six patient groups (n=25) and two groups with health professionals (n=15) participated in this qualitative, descriptive study with focus group interviews. A manifest qualitative content analysis was used. RESULTS: Four categories and nine subcategories emerged from the analysis. Participants saw possible benefits for improved treatment effect and valued this benefit more than possible inconvenience of wearing the sensors. Discrete design and simplicity were considered as facilitators for improved usability. They emphasized the importance of interactive information between patients and health professionals. However, they were concerned about unclear information and inconclusive recordings and some fears about personal integrity were at odds with the expectations on interactivity. CONCLUSIONS: Patients need to feel well informed and find an added value in using wearables. Wearables need to be user-friendly, have an attractive design, and show clinical efficacy in improving disease management. Variations in perceptions regarding integrity, benefits, and effectiveness of monitoring indicate possible conflicts of expectations among participants. The engagement of end users, patients, and health professionals, in the design and implementation process, is crucial for the development of wearable devices that enhance and facilitate neurological rehabilitation practice.


Asunto(s)
Epilepsia/rehabilitación , Enfermedad de Parkinson/rehabilitación , Dispositivos Electrónicos Vestibles , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
18.
Rehabil Psychol ; 62(3): 276-289, 2017 08.
Artículo en Inglés | MEDLINE | ID: mdl-28836808

RESUMEN

OBJECTIVE: This study examined the utility of social-cognitive career theory (SCCT; Lent, Brown, & Hackett, 1994) as a framework to investigate career self-efficacy, outcome expectations, goals, and contextual supports and barriers as predictors of choice actions among transition-age individuals with epilepsy. Moreover, these SCCT constructs are offered as an operational definition of work participation in this population. METHOD: Using a quantitative descriptive research design and hierarchical regression analysis (HRA), 90 transition-age individuals with epilepsy, age 18-25, were recruited from affiliates of the Epilepsy Foundation and invited to complete an online survey comprised of a series of self-report social-cognitive measures. RESULTS: The HRA findings indicated that self-efficacy, outcome expectations, and environmental supports were significant predictors of work participation in youth and young adults with epilepsy. The final model accounted for 58% of the variance in work participation, which is considered a large effect size. CONCLUSIONS: The research findings provide support for the use of the SCCT framework to identify predictors of work participation and to provide guidance for designing customized vocational rehabilitation services and career development interventions for individuals with epilepsy in the transition from adolescence to adulthood. (PsycINFO Database Record


Asunto(s)
Selección de Profesión , Cognición , Epilepsia/psicología , Modelos Psicológicos , Conducta Social , Transición a la Atención de Adultos , Adulto , Epilepsia/rehabilitación , Femenino , Objetivos , Humanos , Masculino , Autoeficacia , Encuestas y Cuestionarios , Adulto Joven
19.
Lancet Neurol ; 16(8): 648-660, 2017 08.
Artículo en Inglés | MEDLINE | ID: mdl-28663005

RESUMEN

During the past ten years, an increasing number of controlled studies have assessed the potential rehabilitative effects of music-based interventions, such as music listening, singing, or playing an instrument, in several neurological diseases. Although the number of studies and extent of available evidence is greatest in stroke and dementia, there is also evidence for the effects of music-based interventions on supporting cognition, motor function, or emotional wellbeing in people with Parkinson's disease, epilepsy, or multiple sclerosis. Music-based interventions can affect divergent functions such as motor performance, speech, or cognition in these patient groups. However, the psychological effects and neurobiological mechanisms underlying the effects of music interventions are likely to share common neural systems for reward, arousal, affect regulation, learning, and activity-driven plasticity. Although further controlled studies are needed to establish the efficacy of music in neurological recovery, music-based interventions are emerging as promising rehabilitation strategies.


Asunto(s)
Demencia/rehabilitación , Epilepsia/rehabilitación , Esclerosis Múltiple/rehabilitación , Musicoterapia/métodos , Rehabilitación Neurológica/métodos , Enfermedad de Parkinson/rehabilitación , Accidente Cerebrovascular/terapia , Humanos
20.
Conscientiae saúde (Impr.) ; 16(2): 2017249258, jun. 2017.
Artículo en Portugués | LILACS | ID: biblio-875854

RESUMEN

Introdução: O Enriquecimento ambiental (EA) tem sido estudado em reabilitação para diversas patologias. Objetivo: investigar os efeitos do EA em ratos wistar jovens submetidos ao status epilepticus, sobre os padrões de comportamento e ansiedade. Métodos: Estudo longitudinal com 40 ratos, submetidos às crises no 15º dia e enriquecimento ambiental e, posteriormente, aos testes labirinto em cruz elevado e campo aberto. Utilizou-se o teste ANOVA two-way, considerando como significante valor de p<0,05. Resultados: No teste do labirinto houve relação entre levantar em duas patas (p<0,01), comportamento de risco (p<0,01) tempo nos braços abertos (p<0,01), número de entradas nos braços fechados (p<0,01), tempo nos braços fechados (p<0,01) e o número de cruzamentos no campo aberto (p=0,01) com status epilepticus. Não houve relação entre os testes e o EA. Conclusão: O EA não reverteu os padrões de ansiedade e comportamento afetados pelo status epilepticus. (AU)


Background: Environmental Enrichment (EE) has been studied in rehabilitation for several pathologies. Objective: to investigate the effects of EE on young wistar rats submitted to status epilepticus, on behavior and anxiety patterns. Methods: Longitudinal study with 40 rats, submitted to seizures on the 15th day and environmental enrichment, and later to the labyrinth tests in high cross and open field. The two-way ANOVA test was used, considering a significant value of p <0.05. Results: In the labyrinth test, there was a relationship between two paws (p <0.01), risk behavior (p <0.01) in open arms (p <0.01), number of entries in closed arms (p <0.01), time in the closed arms (p <0.01) and the number of crosses in the open field (p = 0.01) with status epilepticus. There was no relationship between the tests and the EE. Conclusion: The EE did not reverse the behavior and anxiety patterns affected by the status epilepticus. (AU)


Asunto(s)
Animales , Masculino , Ratas , Estado Epiléptico/rehabilitación , Conducta , Epilepsia/rehabilitación , Estudios Longitudinales , Ratas Wistar , Prueba de Campo Abierto , Prueba de Laberinto Elevado , Plasticidad Neuronal
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