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2.
Curr Sports Med Rep ; 20(1): 26-30, 2021 Jan 01.
Article En | MEDLINE | ID: mdl-33395128

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.


Attitude to Health , Epilepsy/rehabilitation , Exercise , Sports , Communication , Humans , Patient Safety , Stereotyping
3.
Epilepsy Behav ; 113: 107552, 2020 12.
Article En | MEDLINE | ID: mdl-33242775

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.


Decision Support Systems, Clinical , Epilepsy/rehabilitation , Patient Compliance , Self-Management/methods , Adult , Arizona , Female , Humans , Male , Middle Aged , Texas
4.
Epilepsia ; 61(8): 1649-1658, 2020 08.
Article En | MEDLINE | ID: mdl-32602966

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.


Attention , Cognition , Epilepsy/rehabilitation , Executive Function , Exercise Therapy/methods , Memory , Adult , Anticonvulsants/therapeutic use , Epilepsy/drug therapy , Epilepsy/physiopathology , Epilepsy/psychology , Exercise , Female , Humans , Male , Mental Status and Dementia Tests , Muscle Strength , Muscle Stretching Exercises , Neuropsychological Tests , Oxygen Consumption , Physical Fitness , Single-Blind Method , Stroop Test , Trail Making Test , Treatment Outcome , Warm-Up Exercise
5.
Epilepsy Behav ; 104(Pt A): 106898, 2020 03.
Article En | MEDLINE | ID: mdl-31986442

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.


Epilepsy/psychology , Epilepsy/rehabilitation , Rehabilitation Centers , Adolescent , Adult , Child , Cohort Studies , Epilepsy/epidemiology , Female , France/epidemiology , Humans , Male , Prospective Studies , Quality of Life/psychology , Surveys and Questionnaires , Young Adult
6.
Epilepsy Behav ; 104(Pt A): 106891, 2020 03.
Article En | MEDLINE | ID: mdl-31931460

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.


Epilepsy/rehabilitation , Exercise Therapy/standards , Exercise/physiology , Health Knowledge, Attitudes, Practice , Physical Therapists/standards , Seizures/rehabilitation , Adult , Cross-Sectional Studies , Epilepsy/epidemiology , Epilepsy/psychology , Exercise/psychology , Exercise Therapy/methods , Female , Humans , Male , Middle Aged , Nigeria/epidemiology , Physical Therapists/psychology , Physical Therapy Modalities/standards , Seizures/epidemiology , Seizures/psychology , Surveys and Questionnaires , Young Adult
7.
Epilepsy Behav ; 102: 106698, 2020 01.
Article En | MEDLINE | ID: mdl-31785487

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.


Employment/methods , Epilepsy/rehabilitation , Program Development/methods , Rehabilitation, Vocational/methods , Employment/economics , Employment/psychology , Epilepsy/economics , Epilepsy/psychology , Humans , Program Development/economics , Rehabilitation, Vocational/economics , Rehabilitation, Vocational/psychology
8.
Epilepsy Behav ; 103(Pt A): 106386, 2020 02.
Article En | MEDLINE | ID: mdl-31645316

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.


Attention Deficit Disorder with Hyperactivity/rehabilitation , Behavior Therapy , Child Behavior Disorders/rehabilitation , Cognitive Dysfunction/rehabilitation , Epilepsy/rehabilitation , Psychotherapy, Group , Registries , Adolescent , Attention Deficit Disorder with Hyperactivity/epidemiology , Child , Child Behavior Disorders/epidemiology , Cognitive Dysfunction/epidemiology , Cognitive Remediation , Comorbidity , Epilepsy/epidemiology , Female , Humans , Male , Retrospective Studies
9.
Psychiatr Danub ; 31(Suppl 3): 467-474, 2019 Sep.
Article En | MEDLINE | ID: mdl-31488774

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.


Epilepsy/physiopathology , Epilepsy/rehabilitation , Music Therapy , Music/psychology , Seizures/prevention & control , Seizures/physiopathology , Acoustic Stimulation , Brain Mapping , Electroencephalography , Epilepsy/complications , Humans , Seizures/complications
10.
Appl Neuropsychol Child ; 8(4): 326-332, 2019.
Article En | MEDLINE | ID: mdl-30295544

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.


Brain Injuries, Traumatic/rehabilitation , Cognitive Dysfunction/rehabilitation , Cognitive Remediation , Epilepsy/rehabilitation , Neurological Rehabilitation , Social Skills , Therapy, Computer-Assisted , Tic Disorders/rehabilitation , Adolescent , Brain Injuries, Traumatic/complications , Child , Cognitive Dysfunction/etiology , Cognitive Remediation/instrumentation , Cognitive Remediation/methods , Epilepsy/complications , Female , Humans , Male , Neurological Rehabilitation/instrumentation , Neurological Rehabilitation/methods , Outcome and Process Assessment, Health Care , Pilot Projects , Therapy, Computer-Assisted/instrumentation , Therapy, Computer-Assisted/methods , Tic Disorders/complications , Virtual Reality
11.
Dev Med Child Neurol ; 61(2): 226-231, 2019 02.
Article En | MEDLINE | ID: mdl-30194703

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.


Cerebral Palsy/rehabilitation , Developmental Disabilities/rehabilitation , Disabled Persons/education , Early Intervention, Educational , Epilepsy/rehabilitation , Learning Disabilities/rehabilitation , Adult , Canada/epidemiology , Cerebral Palsy/psychology , Developmental Disabilities/psychology , Epilepsy/psychology , Female , Healthcare Disparities , Humans , Learning Disabilities/psychology , Longitudinal Studies , Male , Surveys and Questionnaires , Young Adult
12.
Brasília; CONITEC; dez. 2018. ilus, tab.
Non-conventional Pt | BRISA | ID: biblio-997937

CONTEXTO: A epilepsia é uma condição neurológica caracterizada por crises epilépticas recorrentes. A epilepsia resistente a medicamento (do inglês, Drug-Resistant Epilepsy ­ DRE) ocorre quando há persistência de crises epilépticas apesar do uso de dois fármacos anticonvulsivantes de primeira linha, em doses adequadas. O tratamento disponível no SUS inclui fármacos antiepilépticos (FAE) e a cirurgia cerebral que é recomendada pelo PCDT do Ministério da Saúde. A cirurgia pode ser considerada curativa para alguns tipos específicos de crises epilépticas, porém 20 a 30% dos pacientes, não evoluem bem ou não são candidatos à cirurgia. A utilização da terapia de eletroestimulação do nervo vago seria uma opção para estes pacientes. TECNOLOGIA: Estimulação elétrica do nervo vago com dispositivo implantável. PERGUNTA: O uso da terapia de eletroestimulação do nervo vago é eficaz, segura e custo-efetiva no tratamento de pacientes pediátricos com epilepsia resistente a medicamento para diminuição do número de crises quando comparado ao sham do método (estimulação em baixa frequência) ou aos FAE apenas? EVIDÊNCIAS CIENTÍFICAS: Há revisões sistemáticas (RS) com metanálises que avaliaram a terapia de eletroestimulação do nervo vago em população mista (adultos e crianças) e apresentam resultados favoráveis no desfecho de redução de ≥ 50% na frequência de crises epilépticas, principal desfecho avaliado. Entre os resultados das RS, verificou-se que a terapia está relacionada à um risco relativo (RR) de até 1,73 em comparação ao sham do método. No entanto, o ECR que incluiu apenas pacientes menores de 18 anos não verificou diferença estatisticamente significante entre os grupos avaliados (estimulação de alta frequência do nervo vago vs sham do método). O ECR que comparou a terapia de eletroestimulação do nervo vago ao tratamento com FAE, em pacientes menores de 17 anos, apresentou redução de ≥ 50% na frequência de crises em 39,4% dos pacientes do grupo tratado com a terapia e em 24,0% dos pacientes tratados com os FAE. AVALIAÇÃO ECONÔMICA: Foi realizada uma análise de custo-efetividade e apresentada uma razão de custo efetividade incremental (RCEI) de 84.666,02 em 10 anos e em 20 anos(caso base), uma RCEI de 51.088,55 com a utilização do dispositivo, em adição aos FAE. AVALIAÇÃO DE IMPACTO ORÇAMENTÁRIO: A análise estimou um impacto orçamentário incremental, considerando uma possível redução dos recursos em saúde, de R$ 63.036.945,75. RECOMENDAÇÃO PRELIMINAR: De acordo com o exposto, a CONITEC em sua 64ª reunião, no dia 08 de março de 2018, recomendou a incorporação no SUS do gerador de pulso para nervo vago na terapia adjuvante em pacientes pediátricos com epilepsia resistente a medicamentos, sem indicação para cirurgia ressectiva de epilepsia. A matéria foi disponibilizada em consulta pública. CONSULTA PÚBLICA: Foram recebidas 14 contribuições técnico-científicas e 33 contribuições de experiência ou opinião, sendo a maioria concordante com a recomendação preliminar da CONITEC. As contribuições, na sua totalidade, apontaram os benefícios da tecnologia analisada aos pacientes que apresentam epilepsia resistente aos medicamentos e descreveram pontos positivos e negativos da mesma. Os participantes também descreveram sua experiência negativa com medicamentos e a dieta cetogênica, utilizados no tratamento da epilepsia. A CONITEC entendeu que não houve argumentação suficiente para alterar sua recomendação inicial. RECOMENDAÇÃO FINAL: Os membros da CONITEC, na 66ª reunião ordinária em 10 de maio de 2018, deliberaram por recomendar a criação de um procedimento para estimulação elétrica do nervo vago para terapia adjuvante em pacientes com epilepsia resistente a medicamentos, sem indicação para cirurgia ressectiva de epilepsia, em Centros e Unidades Habilitados conforme Protocolo de Uso. Foi assinado o Registro de Deliberação nº 349/2018. A estimulação elétrica do nervo vago também foi avaliada em outro relatório, cuja solicitação foi proveniente da atualização do PCDT de Epilepsia, como terapia adjuvante ao tratamento farmacológico em crianças e adultos com epilepsia focal ou generalizada refratária a pelo menos dois esquemas com medicamentos anticonvulsivantes. DECISÃO: Incorporar o procedimento para estimulação elétrica do nervo vago para terapia adjuvante em pacientes com epilepsia resistente a medicamentos, sem indicação para cirurgia ressectiva de epilepsia no âmbito do Sistema Único de Saúde ­ SUS, dada pela Portaria nº 24 de 11 de setembro de 2018, publicada no DOU de 12/09/2018. A portaria de incorporação contemplou as duas indicações solicitadas.


Humans , Transcutaneous Electric Nerve Stimulation/instrumentation , Epilepsy/rehabilitation , Technology Assessment, Biomedical , Health Evaluation/economics , Unified Health System , Brazil , Drug Resistance , Cost-Benefit Analysis/economics
13.
Epilepsy Behav ; 89: 153-158, 2018 12.
Article En | MEDLINE | ID: mdl-30415138

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.


Delivery of Health Care, Integrated/organization & administration , Epilepsy/therapy , Psychiatric Rehabilitation/organization & administration , Transition to Adult Care/organization & administration , Adolescent , Adult , Continuity of Patient Care/organization & administration , Epilepsy/rehabilitation , Female , Humans , Male , Program Evaluation , Quality of Life , Young Adult
14.
Epilepsy Behav ; 86: 116-123, 2018 09.
Article En | MEDLINE | ID: mdl-29997037

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.


Communication , Epilepsy/psychology , Epilepsy/rehabilitation , Personal Autonomy , Power, Psychological , Adolescent , Child , Female , Focus Groups , Humans , Male , Medication Adherence , Parents , Social Participation , Young Adult
15.
Epilepsy Res ; 145: 89-92, 2018 09.
Article En | MEDLINE | ID: mdl-29933145

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.


Cadherins/genetics , Epilepsy/genetics , Epilepsy/pathology , Klinefelter Syndrome/genetics , Klinefelter Syndrome/pathology , Child, Preschool , Chromosomes, Human, X/genetics , Epilepsy/complications , Epilepsy/rehabilitation , Humans , Klinefelter Syndrome/complications , Klinefelter Syndrome/rehabilitation , Male , Protocadherins
16.
BMC Health Serv Res ; 18(1): 497, 2018 06 27.
Article En | MEDLINE | ID: mdl-29945630

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.


Disabled Persons , Dogs , Exercise , Adolescent , Adult , Aged , Animals , Diabetes Mellitus/rehabilitation , Disabled Persons/rehabilitation , Epilepsy/rehabilitation , Female , Humans , Longitudinal Studies , Male , Middle Aged , Quality of Life , Self Concept , Social Behavior , Sweden , Young Adult
17.
Neuropsychol Rev ; 28(1): 88-110, 2018 03.
Article En | MEDLINE | ID: mdl-29450813

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.


Epilepsy/psychology , Epilepsy/rehabilitation , Memory , Humans
18.
Acta Neurol Scand ; 137(2): 188-194, 2018 Feb.
Article En | MEDLINE | ID: mdl-28714112

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.


Epilepsy/rehabilitation , Parkinson Disease/rehabilitation , Wearable Electronic Devices , Adult , Aged , Aged, 80 and over , Female , Focus Groups , Humans , Male , Middle Aged , Young Adult
19.
Rehabil Psychol ; 62(3): 276-289, 2017 08.
Article En | MEDLINE | ID: mdl-28836808

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


Career Choice , Cognition , Epilepsy/psychology , Models, Psychological , Social Behavior , Transition to Adult Care , Adult , Epilepsy/rehabilitation , Female , Goals , Humans , Male , Self Efficacy , Surveys and Questionnaires , Young Adult
20.
Lancet Neurol ; 16(8): 648-660, 2017 08.
Article En | MEDLINE | ID: mdl-28663005

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.


Dementia/rehabilitation , Epilepsy/rehabilitation , Multiple Sclerosis/rehabilitation , Music Therapy/methods , Neurological Rehabilitation/methods , Parkinson Disease/rehabilitation , Stroke/therapy , Humans
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