RESUMO
OBJECTIVE: We aimed to (i) compare the clinical, neuropsychological, and neuroimaging characteristics of unprovoked late-onset epilepsy (LOE) patients with cognitive symptoms against probable Alzheimer's disease (AD) patients; (ii) clarify how neurodegeneration and other processes could be implicated in the cognitive symptoms of unprovoked LOE patients; and (iii) characterize the longitudinal trajectory of unprovoked LOE patients with cognitive symptoms. METHODS: Twenty-six unprovoked LOE patients with cognitive symptoms and 26 probable AD were retrospectively recruited from epilepsy and memory clinics at a single tertiary referral center. The patients underwent comprehensive clinical, neuropsychological, and 18Fluorodeoxyglucose PET-CT assessments. All LOE patients had clinical follow-up and a subset of 17 patients had repeat neuropsychological assessments. RESULTS: At baseline, 18% of LOE patients with cognitive symptoms had dementia-range cognitive impairment and one received a diagnosis of probable AD. Compared with the probable AD group, the LOE group did not perform significantly better in global measures of cognition (total ACE-III), neuropsychological tests for fluency, working memory, language, attention, or executive function, but performed better in naming, memory, and visuospatial ability. The commonest patterns of cognitive impairment in the LOE group were frontal and left temporal, whereas all AD patients exhibited parietotemporal patterns. The AD group had more 18Fluorodeoxyglucose PET-CT hypometabolism in the parietal and occipital, but not the temporal and frontal lobes. During the 3.0 ± 3.2 years follow-up, improved seizure frequency in the LOE group covaried with improved total ACE-III score, there was no further conversion to probable AD and no group-level cognitive decline. CONCLUSION: Unprovoked LOE patients with cognitive symptoms had varying severities of cognitive impairment, and different patterns of cognitive and imaging abnormalities compared with AD patients. They were rarely diagnosed with probable AD at presentation or follow-up. Cognitive outcome in LOE may be related to seizure control. Cerebral small vessel disease may play a role in LOE-associated cognitive impairment.
Assuntos
Doença de Alzheimer , Disfunção Cognitiva , Epilepsia , Humanos , Doença de Alzheimer/complicações , Doença de Alzheimer/diagnóstico por imagem , Tomografia por Emissão de Pósitrons combinada à Tomografia Computadorizada , Estudos Retrospectivos , Cognição , Disfunção Cognitiva/complicações , Disfunção Cognitiva/diagnóstico por imagem , Tomografia por Emissão de Pósitrons/métodos , Testes Neuropsicológicos , Fluordesoxiglucose F18 , Epilepsia/complicações , Epilepsia/diagnóstico por imagem , ConvulsõesRESUMO
AIMS AND OBJECTIVES: The aim of this study is to enhance the understanding of the core elements and influencing factors on the community-based epilepsy nurse's role and responsibilities. BACKGROUND: Internationally, epilepsy nurse specialists play a key role in providing person-centred care and management of epilepsy but there is a gap in understanding of their role in the community. DESIGN: A national three-stage, mixed-method study was conducted. METHODS: One-on-one, in-depth semi-structured qualitative interviews were conducted online with 12 community-based epilepsy nurses (Stage 1); retrospective analysis of data collected from the National Epilepsy Line, a nurse-led community helpline (Stage 2); and focus group conducted with four epilepsy nurses, to delve further into emerging findings (Stage 3). A thematic analysis was conducted in Stages 1 and 3, and a descriptive statistical analysis of Stage 2 data. Consolidated Criteria for Reporting Qualitative studies checklist was followed for reporting. RESULTS: Three key themes emerged: (1) The epilepsy nurse career trajectory highlighted a lack of standardised qualifications, competencies, and career opportunities. (2) The key components of the epilepsy nurse role explored role diversity, responsibilities, and models of practice in the management of living with epilepsy, and experiences navigating complex fragmented systems and practices. (3) Shifting work practices detailed the adapting work practices, impacted by changing service demands, including COVID-19 pandemic experiences, role boundaries, funding, and resource availability. CONCLUSION: Community epilepsy nurses play a pivotal role in providing holistic, person-centred epilepsy management They contribute to identifying and addressing service gaps through innovating and implementing change in service design and delivery. RELEVANCE TO CLINICAL PRACTICE: Epilepsy nurses' person-centred approach to epilepsy management is influenced by the limited investment in epilepsy-specific integrated care initiatives, and their perceived value is impacted by the lack of national standardisation of their role and scope of practice. NO PATIENT OR PUBLIC CONTRIBUTION: Only epilepsy nurses' perspectives were sought.
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COVID-19 , Epilepsia , Enfermeiras e Enfermeiros , Humanos , Pandemias , Estudos Retrospectivos , Papel do Profissional de Enfermagem , Pesquisa QualitativaRESUMO
Epilepsy is a severe neurological disorder that is usually diagnosed by using an electroencephalogram (EEG). However, EEG signals are complex, nonlinear, and dynamic, thus generating large amounts of data polluted by many artefacts, lowering the signal-to-noise ratio, and hampering expert interpretation. The traditional seizure-detection method of professional review of long-term EEG signals is an expensive, time-consuming, and challenging task. To reduce the complexity and cost of the task, researchers have developed several seizure-detection approaches, primarily focusing on classification systems and spectral feature extraction. While these methods can achieve high/optimal performances, the system may require retraining and following up with the feature extraction for each new patient, thus making it impractical for real-world applications. Herein, we present a straightforward manual/automated detection system based on the simple seizure feature amplification analysis to minimize these practical difficulties. Our algorithm (a simplified version is available as additional material), borrowing from the telecommunication discipline, treats the seizure as the carrier of information and tunes filters to this specific bandwidth, yielding a viable, computationally inexpensive solution. Manual tests gave 93% sensitivity and 96% specificity at a false detection rate of 0.04/h. Automated analyses showed 88% and 97% sensitivity and specificity, respectively. Moreover, our proposed method can accurately detect seizure locations within the brain. In summary, the proposed method has excellent potential, does not require training on new patient data, and can aid in the localization of seizure focus/origin.
Assuntos
Epilepsia , Processamento de Sinais Assistido por Computador , Humanos , Convulsões/diagnóstico , Eletroencefalografia/métodos , Epilepsia/diagnóstico , AlgoritmosRESUMO
While it is often stated that psychiatric co-morbidity in PWE is under-recognized and under-treated, little research has directly examined this assertion. The aims of this study were to understand the rates of confirmed diagnosis and treatment of depression and anxiety in people with epilepsy (PWE). Two samples were recruited: a hospital sample of 106 adult outpatients with epilepsy who underwent a structured psychiatric diagnostic interview and a community sample of 273 PWE who completed validated measures of depression and anxiety symptoms online. In the hospital sample, fewer participants who met criteria for an anxiety disorder had received a prior diagnosis compared to those with a depressive disorder (36% vs 67%). In the community sample, the rates of known diagnosis were comparable (65% vs. 69%). Approximately, one-third of PWE with an anxiety disorder (or clinically significant symptoms) were receiving current treatment compared to approximately half of those with depression. These findings confirm the high rates of psychiatric co-morbidity in PWE and indicate that a large proportion of anxiety diagnoses, in particular, are undetected and not receiving either pharmacological or psychological support. Future work is needed to improve the detection and management of psychiatric co-morbidity in PWE, especially for anxiety disorders.
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Depressão , Epilepsia , Adulto , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Transtornos de Ansiedade/epidemiologia , Transtornos de Ansiedade/terapia , Depressão/diagnóstico , Depressão/epidemiologia , Epilepsia/epidemiologia , Epilepsia/terapia , Hospitais , HumanosRESUMO
PURPOSE: To explore the efficacy and tolerability of adjuvant perampanel (PER) and their associated risk factors in late add-on drug-resistant epilepsy. METHOD: Retrospective multicenter 'real-world' observational study. Consecutively identified patients commenced on PER, with mixed epilepsy syndromes, from nine Australian epilepsy centers. Primary efficacy endpoints were at least 50% reduction in seizure frequency (responders), seizure freedom, and retention at 6 and 12â¯months, following a 3-month titration period. Tolerability endpoints were cessation of PER for any reason, cessation of PER due to treatment-emergent adverse events (TEAE), or cessation due to inefficacy. Outcomes were assessed for a-priori risk factors associated with efficacy and tolerability. RESULTS: Three-hundred and eighty seven adults were identified and followed up for a median of 12.1 months (IQR 7.0-25.2). Focal epilepsy accounted for 79.6% (FE), idiopathic generalized epilepsy (IGE), 10.3% and developmental epileptic encephalopathy (DEE) 10.1%, of the cohort. All patients had drug-resistant epilepsy, 71.6% had never experienced six months of seizure freedom, and the mean number of antiepileptic medications (AEDs) prior to starting PER was six. At 12â¯months, with missing cases classified as treatment failure, retention was 40.0%, responder 21.7%, and seizure freedom 9.0%, whereas, using last outcome carried forward (LOCF), responder and seizure freedom rates were 41.3% and 14.7%, respectively. Older age of epilepsy onset was associated with a marginal increase in the likelihood of seizure freedom at 12-month maintenance (OR 1.04, 95% CI 1.02, 1.06). Male sex (adjusted OR [aOR] 2.06 95% CI 1.33, 3.19), lower number of prior AEDs (aOR 0.84, 95% CI 0.74, 0.96) and no previous seizure-free period of at least 6-month duration (aOR 2.04 95% CI 1.21, 3.47) were associated with retention. Perampanel combined with a GABA receptor AED was associated with a lower responder rate at 12 months but reduced cessation of PER. The most common TEAEs were neuropsychiatric (18.86%), followed by dizziness (13.70%), and sleepiness (5.68%). CONCLUSIONS: Adjuvant PER treatment, even in late-add on drug-resistant epilepsy is an effective and well-tolerated treatment for drug-resistant epilepsy.
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Epilepsia Resistente a Medicamentos , Epilepsia Generalizada , Síndromes Epilépticas , Adulto , Idoso , Anticonvulsivantes/uso terapêutico , Austrália , Epilepsia Resistente a Medicamentos/tratamento farmacológico , Quimioterapia Combinada , Epilepsia Generalizada/tratamento farmacológico , Síndromes Epilépticas/tratamento farmacológico , Humanos , Masculino , Nitrilas , Piridonas/uso terapêutico , Estudos Retrospectivos , Resultado do TratamentoRESUMO
Animal data indicates the hippocampus assists appetite-regulation. We tested this in humans, contrasting two patients (DW, JC) with hippocampal damage to controls on an appetite-regulation test conducted hungry and sated. When hungry, controlsviewed palatable snacks and reported a desire to eat them, a memory-based judgment. After sampling them, they reported liking their taste. Post-lunch (DW ate little, precluding a test of our hypothesis), controls showed a large decrease in desire for the snacks, but less change in taste-liking. JC ate like controls, but reported no change in desire across states, suggesting that the human hippocampus also contributes to appetite-regulation.
Assuntos
Apetite/fisiologia , Comportamento Alimentar/fisiologia , Hipocampo/patologia , Hipocampo/fisiopatologia , Inibição Psicológica , Autocontrole , Adulto , Idoso , Epilepsia Resistente a Medicamentos/cirurgia , Epilepsia do Lobo Temporal/cirurgia , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
Sleep difficulties are commonly reported by patients with epilepsy and can have a detrimental impact on overall quality of life. The purpose of this pilot study was to assess the efficacy of a psychotherapeutic approach, namely Cognitive Behavioral Therapy for Insomnia (CBT-I), in improving sleep quality in patients with epilepsy. Twenty outpatients with epilepsy who reported poor sleep quality were randomized to either a control or CBT-I treatment group, which involved four group-based CBT-I sessions, delivered on a weekly basis. In addition to completing a range of standardized measures related to sleep quality and quality of life, participants also monitored their sleep with a self-completed sleep diary over a two-week period, on two separate occasions. Following CBT-I treatment, no between-group difference was found on any sleep or quality of life measure. However, both the treatment and control groups improved on measures of sleep quality, quality of life, sleep hygiene behaviors, and dysfunctional beliefs about sleep. These findings suggest that sleep monitoring alone may have the potential for prompting healthy behavior change in this clinical population.
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Terapia Cognitivo-Comportamental/métodos , Epilepsia/terapia , Psicoterapia de Grupo/métodos , Qualidade de Vida , Distúrbios do Início e da Manutenção do Sono/terapia , Sono/fisiologia , Adulto , Epilepsia/epidemiologia , Epilepsia/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Qualidade de Vida/psicologia , Distúrbios do Início e da Manutenção do Sono/epidemiologia , Distúrbios do Início e da Manutenção do Sono/psicologia , Resultado do TratamentoRESUMO
Accelerated long-term forgetting (ALF) is a recently discovered memory disorder characterized by intact acquisition and retention over short delays, followed by abnormally fast rates of forgetting. Accelerated long-term forgetting has been repeatedly found in children, but not in adults, with genetic generalized epilepsy (GGE). It is possible that this discrepancy is due to a difference in paradigms used in these studies. The current study aimed to determine whether adults with GGE displayed ALF using two paradigms, one that required complete learning and another one that did not. In addition, we explored the relationships with everyday memory difficulties, working memory, mood, and epilepsy variables. Fourteen adults with GGE were compared with 16 healthy controls on two verbal memory tests: a modified version of the California Verbal Learning Test learned to a criterion of 100% (complete learning) and Logical Memory from the Wechsler Memory Scale (Fourth Edition) presented only once (incomplete learning). Recall was tested at 2â¯min, 30â¯min, and 1â¯week, and recognition at 1â¯week only. Working memory, everyday memory, and mood were also assessed. We found no evidence of ALF on either of the two verbal memory paradigms on recall or recognition tests although patients displayed significantly poorer working memory. Moreover, patients with GGE reported significantly more memory difficulties in everyday life, and these were associated with greater mood disturbances but not with memory tests scores. Greater number of antiepileptic drugs and epilepsy severity also related to memory scores on some tests. Our study suggests that a difference in paradigms used to investigate ALF in children and adults with GGE is unlikely to explain the differences in findings. The study tentatively raises a hypothesis that developmental factors may play a role in ALF in patients with GGE; children with GGE may grow out of ALF. Nevertheless, this hypothesis would need to be tested in a longitudinal study that would follow patients from childhood to early adulthood.
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Epilepsia Generalizada/genética , Epilepsia Generalizada/psicologia , Transtornos da Memória/psicologia , Memória de Curto Prazo/fisiologia , Testes Neuropsicológicos , Adulto , Epilepsia Generalizada/complicações , Feminino , Humanos , Estudos Longitudinais , Masculino , Transtornos da Memória/etiologia , Rememoração Mental/fisiologia , Pessoa de Meia-Idade , Testes Neuropsicológicos/normas , Reconhecimento Psicológico/fisiologia , Adulto JovemRESUMO
BACKGROUND: Achieving seizure control through resective brain surgery is a major predictor of improved quality of life (QOL) among people with refractory (drug-resistant) epilepsy. Nevertheless, QOL is a comprehensive and dynamic construct, consisting of broad dimensions such as physical health, psychosocial well-being, level of independence, social relationships, and beyond. This study highlights the interlinkage and complementarity of these diverse dimensions, and how in practice, patients, clinicians, and others in a social support system can actively promote QOL among surgery patients. METHOD: Twenty-one qualitative in-depth interviews with patients with refractory epilepsy who are either undergoing presurgical assessment or postsurgery follow-up were conducted, to consider their perspective on QOL in relation to their experience of illness and surgical treatment. Data were thematically analyzed, resulting in three key thematic findings. RESULTS: (1) A myriad of QOL dimensions are highly interrelated and interdependent with mutual 'spin-off' effects: Uncontrolled seizures impacted beyond physical and cognitive health, disrupting important social identities such as being successful parents, spouses, and career professionals. The desire for good clinical outcomes from surgery was justified against the need to mitigate these social and personal concerns. (2) In postsurgery care, there were complementary effects of clinical interventions and social factors on patients' QOL. Psychosocial well-being was supported by a combination of improved physical health, self-confidence, psychological interventions, and social support from employers and educators who were sensitive to patients' specialized needs. (3) Engaging in education, employment, and government services influenced not only socioeconomic well-being, but also a sense of social inclusion. Advocacy made on behalf of patients by clinicians and family members has helped to better manage patients' eligibility for social services provision. CONCLUSION: Quality of life is achieved through a comprehensive and interactive social process, and not simply an outcome measure of clinical treatment. The responses and interactions of many others within the patients' life and treatment process, including family members, clinicians, and social service workers, can culminate to influence QOL, highlighting the importance of a relational and social determinants perspective in patient care.
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Epilepsia Resistente a Medicamentos/psicologia , Epilepsia Resistente a Medicamentos/cirurgia , Qualidade de Vida , Apoio Social , Adulto , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Qualidade de Vida/psicologiaRESUMO
OBJECTIVES: This study aimed to examine five-year trajectories of hospital service utilization among individuals living with epilepsy in New South Wales (NSW), Australia, and to identify factors predictive of trajectory group membership. METHODS: This study used group-based trajectory modeling of hospital admissions over a five-year period for individuals living with epilepsy who had an epilepsy-related hospitalization during 1 January 2012 and 31 December 2012 in NSW, Australia (nâ¯=â¯5762). RESULTS: The analysis revealed the following five distinct hospital service utilization trajectory groups: "one-off users" (Group 1; 22.9%), "low-chronic users" (Group 2; 47.1%), "moderate-declining users" (Group 3; 10.3%), "moderate-chronic users" (Group 4; 18.3%), and "high-chronic users" (Group 5; 1.5%). There were key features that defined trajectory group membership, in particular the relative proportions of group members with chronic health conditions, other comorbid conditions, refractory epilepsy, and status epilepticus. For instance, "high-chronic users" (Group 5) had higher proportions of individuals with chronic health conditions (34.8%) and refractory epilepsy (19.1%); "moderate-declining users" (Group 3) had higher proportions of individuals with chronic health conditions (35.1%) and status epilepticus (9.8%); and "low-chronic users" (Group 2) had the lowest proportion of individuals with chronic health conditions. CONCLUSION: It is important to gain a better understanding of hospital service utilization among individuals living with epilepsy. This research has identified trajectory groups of hospital service utilization profiles of individuals living with epilepsy. Identification of predictors of trajectory group membership allows targeting of strategies to reduce hospital admissions, inform healthcare service delivery, and improve the health and wellbeing of individuals living with epilepsy.
Assuntos
Epilepsia/epidemiologia , Epilepsia/psicologia , Hospitalização/tendências , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Vigilância da População , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Doença Crônica , Epilepsia/terapia , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , New South Wales/epidemiologia , Adulto JovemRESUMO
OBJECTIVES: This mixed-method feasibility study conducted in New South Wales (NSW), Australia, aimed to explore clinical practices around the identification of patients with refractory epilepsy and referral from primary care to Tertiary Epilepsy Centers. The perceptions of general practitioners, neurologists, and adults living with refractory epilepsy were considered. METHODS: Fifty-two data collection events were achieved through 22 semi-structured interviews with six neurologists and 12 adults who currently have, or have had refractory epilepsy, and four family members, 10 clinical observations of patient consultations and 20 surveys with general practitioners. A thematic analysis was conducted on the qualitative data alongside assessment of observational fieldnotes and survey data. FINDINGS: Two main themes emerged: 1) Patient healthcare pathways and care experiences highlighted the complex and deeply contextualized experiences of both patients and healthcare professionals, from first identification of people's seizures, in primary and community care settings, to referral to Tertiary Epilepsy Centers, shedding light on a fragmented, nonstandardized referral process, influenced by both individual and shared-care practices. 2) Factors impacting referrals and patient pathways indicated that onward referral to a Tertiary Epilepsy Center is affected by the knowledge, or the lack thereof, of healthcare professionals regarding treatment options. Barriers include limited person-centered care, shared decision-making, and refractory epilepsy education for healthcare professionals, which can delay patients' disease identification and can hinder speedy referral pathways and processes, in Australia for up to 17â¯years. In addition, person-centered communication around care pathways is affected by relationships between clinicians, patients, and family members. CONCLUSION: This study has identified a noticeable lack of standardized care across epilepsy-related healthcare sectors, which recognizes a need for developing and implementing clearer epilepsy-related guidelines and Continuing Professional Development in the primary and community care settings. This, however, requires greater collaboration and commitment in the primary, community, and tertiary care sectors to address the ongoing misconceptions around professional roles and responsibilities to optimize shared-care practices. Ultimately, prioritizing person-centered care on both patients' and professionals' agendas, in order to improve satisfaction with care experiences of people living with complex epilepsy.
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Epilepsia Resistente a Medicamentos/epidemiologia , Epilepsia Resistente a Medicamentos/terapia , Atenção Primária à Saúde/métodos , Encaminhamento e Consulta , Inquéritos e Questionários , Atenção Terciária à Saúde/métodos , Adulto , Idoso , Epilepsia Resistente a Medicamentos/psicologia , Família/psicologia , Estudos de Viabilidade , Feminino , Clínicos Gerais/psicologia , Clínicos Gerais/tendências , Humanos , Masculino , Pessoa de Meia-Idade , Neurologistas/psicologia , Neurologistas/tendências , New South Wales/epidemiologia , Atenção Primária à Saúde/tendências , Pesquisa Qualitativa , Encaminhamento e Consulta/tendências , Atenção Terciária à Saúde/tendênciasRESUMO
OBJECTIVE: The study objective was to develop and validate the first epilepsy-specific anxiety survey instrument (Epilepsy Anxiety Survey Instrument [EASI]) alongside a briefer screening instrument to detect anxiety disorders in routine clinical practice (brEASI). METHODS: The instruments were developed utilizing a mixed-methods approach in four related studies. Pilot items were developed following qualitative interviews with people with epilepsy (PWE; Study 1) and consultation with multidisciplinary experts in anxiety and epilepsy (Study 2). PWE (n = 314) then completed pilot items alongside existing measures of anxiety and depression (Study 3). Factor analysis was conducted to refine the scale and select well-performing items for a briefer diagnostic screener (brEASI). The brEASI was validated against a gold standard diagnostic interview in 106 PWE recruited from an outpatient epilepsy service (Study 4). Receiver operating characteristic analysis was conducted to determine the brEASI's diagnostic performance. RESULTS: Twenty-six pilot items were generated based on the findings of Studies 1 and 2. Analyses in Study 3 resulted in an 18-item EASI, and eight well-performing items were selected for the brEASI. The area under the curve (AUC) of brEASI was excellent (AUC = 0.89, 95% confidence interval = 0.82-0.94). At a cutoff of 7, it demonstrated a sensitivity of 76% and specificity of 84% for identifying Diagnostic and Statistical Manual of Mental Disorders, 5th edition anxiety disorders. SIGNIFICANCE: The EASI and brEASI represent the first valid and reliable epilepsy-specific anxiety instruments. The EASI has been designed to comprehensively assess anxiety in PWE, whereas the brEASI may be used within busy neurology settings to provide rapid information to aid diagnoses of anxiety disorders. Given the significant prevalence and burden of anxiety in PWE, these tools are important potential solutions to improve the understanding and detection of anxiety in epilepsy.
Assuntos
Transtornos de Ansiedade/diagnóstico , Epilepsia/complicações , Adulto , Transtornos de Ansiedade/complicações , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Individuals with epilepsy who cannot be adequately controlled with anti-epileptic drugs, refractory epilepsy, may be suitable for surgical treatment following detailed assessment. This is a complex process and there are concerns over delays in referring refractory epilepsy patients for surgery and subsequent treatment. The aim of this study was to explore the different patient pathways, referral and surgical timeframes, and surgical and medical treatment options for refractory epilepsy patients referred to two Tertiary Epilepsy Clinics in New South Wales, Australia. METHODS: Clinical records were reviewed for 50 patients attending the two clinics, in two large teaching hospitals (25 in Clinic 1; 25 in Clinic 2. A purpose-designed audit tool collected detailed aspects of outpatient consultations and treatment. Patients with refractory epilepsy with their first appointment in 2014 were reviewed for up to six visits until the end of 2016. Data collection included: patient demographics, type of epilepsy, drug management, and assessment for surgery. Outcomes included: decisions regarding surgical and/or medical management, and seizure status following surgery. Patient-reported outcome measures to assess anxiety and depression were collected in Clinic 1 only. RESULTS: Patient mean age was 38.3 years (SD 13.4), the mean years since diagnosis was 17.3 years (SD 9.8), and 88.0% of patients had a main diagnosis of focal epilepsy. Patients were taking an average of 2.3 (SD 0.9) anti-epileptic drugs at the first clinic visit. A total of 17 (34.0%) patients were referred to the surgical team and 11 (22.0%) underwent a neuro-surgical procedure. The average waiting time between visit 1 to surgical referral was 38.8 weeks (SD 25.1), and between visit 1 and the first post-operative visit was 55.8 weeks (SD 25.0). CONCLUSION: The findings confirm international data showing significant waiting times between diagnosis of epilepsy and referral to specialist clinics for surgical assessment and highlight different approaches in each clinic in terms of visit numbers and recorded activities. A standardised pathway and data collection, including patient-reported outcome measures, would provide better evidence for whether promoting earlier referral and assessment for surgery improves the lives of this disease group.
Assuntos
Epilepsia Resistente a Medicamentos/cirurgia , Encaminhamento e Consulta , Tempo para o Tratamento/estatística & dados numéricos , Adulto , Austrália , Auditoria Clínica , Atenção à Saúde/métodos , Atenção à Saúde/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , NeurologiaRESUMO
This paper offers a new way of understanding the course of a chronic, neurological condition through a comprehensive model of patient-reported determinants of health and wellbeing: The Patient Reported ImpleMentation sciEnce (PRIME) model is the first model of its kind to be based on patient-driven insights for the design and implementation of initiatives that could improve tertiary, primary, and community healthcare services for patients with refractory epilepsy, and has broad implications for other disorders; PRIME focuses on: patient-reported determinants of health and wellbeing, pathways through care, gaps in treatment and other system delays, patient need and expectation, and barriers and facilitators to high-quality care provision; PRIME highlights that in the context of refractory epilepsy, patients value appropriate, clear, and speedy referrals from primary care practitioners and community neurologists to specialist healthcare professionals based in tertiary epilepsy centers. Many patients also want to share in decisions around treatment and care, and gain a greater understanding of their debilitating disease, so as to find ways to self-manage their illness more effectively and plan for the future. Here, PRIME is presented using refractory epilepsy as the exemplar case, while the model remains flexible, suitable for adaptation to other settings, patient populations, and conditions; PRIME comprises six critical levels: 1) The Individual Patient Model; 2) The Patient Relationships Model; 3) The Patient Care Pathways Model; 4) The Patient Transitions Model; 5) The Pre- and Postintervention Model; and 6) The Comprehensive Patient Model. Each level is dealt with in detail, while Levels 5 and 6 are presented in terms of where the gaps lie in our current knowledge, in particular in relation to patients' journeys through healthcare, system intersections, and individuals adaptive behavior following resective surgery, as well as others' views of the disease, such as family members.
Assuntos
Tomada de Decisão Compartilhada , Epilepsia Resistente a Medicamentos/diagnóstico , Epilepsia Resistente a Medicamentos/cirurgia , Pessoal de Saúde/psicologia , Ciência da Implementação , Medidas de Resultados Relatados pelo Paciente , Adulto , Idoso , Atenção à Saúde/métodos , Epilepsia Resistente a Medicamentos/psicologia , Família/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
The Open-electroencephalography (EEG) framework is a popular platform to enable EEG measurements and general purposes Brain Computer Interface experimentations. However, the current platform is limited by the number of available channels and electrode compatibility. In this paper we present a fully configurable platform with up to 32 EEG channels and compatibility with virtually any kind of passive electrodes including textile, rubber and contactless electrodes. Together with the full hardware details, results and performance on a single volunteer participant (limited to alpha wave elicitation), we present the brain computer interface (BCI)2000 EEG source driver together with source code as well as the compiled (.exe). In addition, all the necessary device firmware, gerbers and bill of materials for the full reproducibility of the presented hardware is included. Furthermore, the end user can vary the dry-electrode reference circuitry, circuit bandwidth as well as sample rate to adapt the device to other generalized biopotential measurements. Although, not implemented in the tested prototype, the Biomedical Analogue to Digital Converter BIOADC naturally supports SPI communication for an additional 32 channels including the gain controller. In the appendix we describe the necessary modification to the presented hardware to enable this function.
Assuntos
Interfaces Cérebro-Computador , Encéfalo/fisiologia , Eletroencefalografia/métodos , Eletrodos , Desenho de Equipamento , Humanos , Interface Usuário-ComputadorRESUMO
OBJECTIVE: To determine the frequency and predictors of return to driving within 1 year after a diagnosis of epilepsy. METHODS: SEISMIC (the Sydney Epilepsy Incidence Study to Measure Illness Consequences) was a prospective, multicenter, community-wide study of people of all ages with newly diagnosed epilepsy in Sydney, Australia. Demographic, socioeconomic, and clinical characteristics and driving status were obtained as soon as possible after baseline registration with a diagnosis of epilepsy. Multivariate logistic regression was used to determine predictors of return to driving at 12-month follow-up. RESULTS: Among 181 (76%) adult participants (≥18 years old) who reported driving before an epilepsy diagnosis, 152 provided information on driving at 12 months, of whom 118 (78%) had returned to driving. Driving for reasons of getting to work or place of education (odds ratio [OR] = 4.70, 95% confidence intervals [CI] = 1.87-11.86), no seizure recurrence (OR = 5.15, 95% CI = 2.07-12.82), and being on no or a single antiepileptic drug (OR = 4.54, 95% CI = 1.45-14.22) were associated with return to driving (C statistic = 0.79). More than half of participants with recurrent seizures were driving at follow-up. SIGNIFICANCE: Early return to driving after a diagnosis of epilepsy is related to work/social imperatives and control of seizures, but many people with recurrent seizures continue to drive. Further efforts are required to implement driving restriction policies and to provide transport options for people with epilepsy.
Assuntos
Condução de Veículo/legislação & jurisprudência , Epilepsia/diagnóstico , Epilepsia/epidemiologia , Sistema de Registros , Adulto , Epilepsia/economia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , New South Wales/epidemiologia , Projetos Piloto , Estudos Prospectivos , Fatores Socioeconômicos , Fatores de TempoRESUMO
Disturbed sleep can negatively affect overnight memory retention as well as new learning the subsequent day. In healthy participants, positive associations between memory performance and sleep characteristics (e.g., time spent in slow-wave sleep [SWS]) have been detected. In a previous study, we found that SWS was much reduced in patients with focal seizures, but when correlations between memory complaints and various sleep characteristics were considered, the only significant relationship was with the time to onset of rapid eye movement (REM) sleep (i.e., REM latency). In this study, we investigated the relationships between sleep, epilepsy, and objective memory performance variables. Twenty-five patients with focal seizures had their memory tested while undergoing a two-day ambulatory electroencephalography (EEG). The sleep variables of interest were the percentage of time spent in SWS (%SWS) and REM latency. Epilepsy variables included the presence of (1) seizures, (2) interictal epileptiform discharges, and/or (3) hippocampal lesions as well as site of seizure origin (temporal vs extratemporal). Overnight retention (of autobiographical events, a story, and a complex geometric figure) and the ability to learn a word list on day 2 were the measures of memory. A significant positive correlation was found between word-list learning and %SWS during the previous night. A significant negative correlation was observed between REM latency and overnight retention of autobiographical events. Overnight retention scores for the story and geometric figure were not related to sleep characteristics but were negatively affected by the presence of epileptiform activity. Story retention was also worse for temporal lobe epilepsy (TLE) than for patients with extratemporal epilepsy (ETE). Those with hippocampal lesions were more impaired than those without lesions on word-list learning, autobiographical events' retention, and story retention. When multiple contributing factors were entered into regression analyses, %SWS was found to be the best predictor of subsequent word-list learning, whereas the presence of a hippocampal lesion was the best predictor of overnight retention of autobiographical events and a story. These findings provide further evidence of the ways in which particular sleep characteristics are associated with memory and suggest that treatment of sleep disturbances in patients with epilepsy might be helpful for improving their performance.
Assuntos
Epilepsia/fisiopatologia , Memória/fisiologia , Convulsões/fisiopatologia , Sono REM/fisiologia , Aprendizagem Verbal/fisiologia , Adulto , Eletroencefalografia/tendências , Epilepsia/diagnóstico , Epilepsia/psicologia , Feminino , Hipocampo/fisiopatologia , Humanos , Masculino , Transtornos da Memória/diagnóstico , Transtornos da Memória/fisiopatologia , Transtornos da Memória/psicologia , Convulsões/diagnóstico , Convulsões/psicologia , Transtornos do Sono-Vigília/diagnóstico , Transtornos do Sono-Vigília/fisiopatologia , Transtornos do Sono-Vigília/psicologia , Adulto JovemRESUMO
OBJECTIVE: The objective of this study was to analyze the effectiveness and long-term tolerability of adjuvant lacosamide (LCM) in a multicenter cohort. We aim to assess outcomes of LCM-containing antiepileptic drug (AED) combinations based upon 'mechanism of action' (MoA) and patient's clinical features. METHODS: Consecutive patients commenced on LCM, with focal epilepsy were identified from three Australian hospitals. The 12-month efficacy endpoints were greater than 50% reduction in seizure frequency (responders) and seizure freedom. Tolerability endpoints were cessation of LCM for any reason, cessation due to side-effects and censoring due to inefficacy. Outcomes were assessed according to concomitant AEDs according to their MoA and the clinical risk factor profile. RESULTS: Three hundred ten patients were analyzed and followed for median 17.3months. Two hundred ninety-nine (97%) had drug-resistant epilepsy, and 155 (50%) had tried more than 7 AEDs at LCM commencement. Adjuvant LCM was associated with responder and seizure freedom rate of 29% and 9% respectively at 12months. Lower baseline seizure frequency, a prior 6-month period of seizure freedom at any time since epilepsy diagnosis and being on fewer concomitant AEDs were predictive of 12-month seizure freedom. Previous focal to bilateral tonic-clonic seizures (FBTCS), lower baseline seizure frequency, and concomitant AED reduction after LCM commencement were associated with improved LCM tolerability. No specific MoA AED combinations offered any efficacy or tolerability advantage. SIGNIFICANCE: Adjuvant LCM is associated with seizure freedom rates of 9% at 12months after commencement and is predicted by lower prior seizure frequency, a period of 6months or longer of seizure freedom since diagnosis and fewer concomitant AEDs. While the broad MoA of concomitant AEDs did not influence efficacy or tolerability outcomes, we have provided a framework that may be utilized in future studies to help identify optimal synergistic AED combinations.
Assuntos
Acetamidas/uso terapêutico , Anticonvulsivantes/uso terapêutico , Epilepsias Parciais/tratamento farmacológico , Lacosamida/uso terapêutico , Adolescente , Adulto , Austrália , Estudos de Coortes , Epilepsia Resistente a Medicamentos/tratamento farmacológico , Feminino , Humanos , Masculino , Estudos Retrospectivos , Convulsões/tratamento farmacológico , Resultado do Tratamento , Adulto JovemRESUMO
OBJECTIVES: Adult patients with refractory epilepsy who are potential candidates for resective surgery undergo a period of presurgical investigation in tertiary epilepsy centers (TECs), where they engage extensively with healthcare professionals and receive a range of treatment-related information. This qualitative study aimed to examine the experiences of adult patients with refractory epilepsy leading up to and during presurgical investigation and how their perceptions of resective surgery are shaped. METHODS: In-depth interviews with 12 patients and six epilepsy specialist clinicians and 12 observations of routine patient-clinician consultations took place at two TECs in Sydney, Australia. Data were thematically analyzed via group work. RESULTS: Patients reflected on prior experiences of poor seizure control and inadequate antiepileptic drug management and a lack of clarity about their condition before referral to tertiary care. Poor continuity of care and disrupted care transitions affected patients from regional locations. Tertiary referral increased engagement with personalized information about refractory epilepsy, which intensified during presurgical assessments with additional hospital visits and consultations. Experiential information, such as testimonials of other patients, influenced perceptions of surgery and fostered more trust and confidence towards healthcare professionals. CONCLUSION: Qualitative inquiry detailed multifaceted effects of information on patients' overall treatment trajectory and experience of healthcare. Earlier patient identification for surgical assessments should be accompanied by access to good quality information at primary and community care levels and strengthened referral processes.
Assuntos
Epilepsia Resistente a Medicamentos/psicologia , Epilepsia Resistente a Medicamentos/cirurgia , Participação do Paciente/psicologia , Participação do Paciente/tendências , Pesquisa Qualitativa , Encaminhamento e Consulta/tendências , Adulto , Anticonvulsivantes/uso terapêutico , Tomada de Decisões , Epilepsia Resistente a Medicamentos/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , New South Wales/epidemiologia , Resultado do TratamentoRESUMO
This study examined the health service utilization and hospital treatment cost of individuals with epilepsy by age group, mortality within 30days, and surgical outcomes for individuals with refractory epilepsy in New South Wales (NSW), Australia. A retrospective examination of linked hospitalization and mortality data for individuals hospitalized with a diagnosis of epilepsy during 2012-2016. Hospitalized incidence rates per 1000 population were calculated, and negative binomial regression was used to examine temporal trends. Mortality within 30days of hospitalization was identified, along with cause of death. There were 44,722 hospitalizations during the five-year period, with a hospitalization rate of 85.6 per 1000 population (95% confidence interval (CI): 84.7-86.4). Total hospital treatment costs were AUD$402.9 million. Children aged ≤17years accounted for 32.0% of hospitalizations. Just over half to two-thirds of hospitalizations for each age group were for a principal diagnosis of epilepsy, with 2976 hospitalizations of individuals for status epilepticus. The overall mean hospital length of stay (LOS) for epilepsy hospitalizations was 5.1days (standard deviation (SD)=9.0). Thirty-day mortality was highest for individuals aged ≥65years (6.7%), and epilepsy was identified as the underlying cause of death for 18.2% of deaths. This research has provided insight into the healthcare utilization profiles of individuals with epilepsy at different ages. Epilepsy hospitalizations constitute a substantial cost to the healthcare system, and better overall management of seizures and comorbid conditions is likely to lead to a reduction in the need for hospitalization.