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BACKGROUND: Dissociative seizures, also known as functional or psychogenic non-epileptic seizures, account for 11%-27% of all emergency seizure presentations. Misdiagnosis as epileptic seizures is common and leads to ineffective and potentially harmful treatment escalations. We assess the potential for diagnostic improvement at different stages of emergency workup and estimate the utility of benzodiazepines. METHODS: A retrospective study of all emergency presentations with a discharge diagnosis of acute dissociative seizures seen at a university hospital 2010-2022 was performed to assess clinical characteristics and emergency decision-making. RESULTS: Among 156 patients (73% female, median 29 years), 15% presented more than once for a total of 203 presentations. Half of seizures were ongoing at first medical contact; prolonged seizures and clusters were common (23% and 24%). Diagnostic accuracy differed between on-site emergency physicians and emergency department neurologists (12% vs 52%). Typical features such as eye closure, discontinuous course and asynchronous movements were common. Benzodiazepines were given in two-thirds of ongoing seizures, often in high doses and preferentially for major hyperkinetic semiology. Clinical response to benzodiazepines was mixed, with a minority of patients remaining either unaffected (16%) or becoming critically sedated (13%). A quarter of patients given benzodiazepines by emergency medical services were admitted to a monitoring unit, 9% were intubated. CONCLUSIONS: Improved semiological assessment could reduce early misdiagnosis of dissociative seizures. Although some seizures seem to respond to benzodiazepines, critical sedation is common, and further studies are needed to assess the therapeutic ratio.
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Convulsiones Psicógenas no Epilépticas , Convulsiones , Humanos , Femenino , Masculino , Estudios Retrospectivos , Servicio de Urgencia en Hospital , Benzodiazepinas/uso terapéutico , ElectroencefalografíaRESUMEN
Psychological stress is the most commonly self-reported precursor of epileptic seizures. However, retrospective and prospective studies remain inconclusive in this regard. Here, we explored whether seizures would be preceded by significant changes in reported stressors or resource utilization. This study is based on high-frequency time series through daily online completion of personalized questionnaires of 9-24 items in epilepsy outpatients and compared responses 1-14 days before seizures with interictal time series. Fourteen patients (79% women, age = 23-64 years) completed daily questionnaires over a period of 87-898 days (median = 277 days = 9.2 months). A total of 4560 fully completed daily questionnaires were analyzed, 685 of which included reported seizure events. Statistically significant changes in preictal compared to interictal dynamics were found in 11 of 14 patients (79%) across 41 items (22% of all 187 items). In seven of 14 patients (50%), seizures were preceded by a significant mean increase of stressors and/or a significant mean decrease of resource utilization. This exploratory analysis of long-term prospective individual patient data on specific stressors and personal coping strategies generates the hypothesis that medium-term changes in psychological well-being may precede the occurrence of epileptic seizures in some patients.
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Epilepsia , Humanos , Femenino , Adulto Joven , Adulto , Persona de Mediana Edad , Masculino , Estudios Prospectivos , Estudios Retrospectivos , Epilepsia/epidemiología , Convulsiones/epidemiología , Encuestas y Cuestionarios , ElectroencefalografíaRESUMEN
OBJECTIVE: To investigate the repercussions of the war in Ukraine on people with epilepsy (PWE), focusing on access to health care, seizure control, quality of life (QoL), psychological distress, anxiety, and depression; and to identify the key factors influencing these measures. METHODS: Consecutive PWE, ≥18 years of age, presenting to one of seven health centers across Ukraine were invited to complete a self-administered survey in 2023. The survey gathered information on clinical and demographic aspects, geographic displacement, and access to care and medications. It also contained five valid questionnaires exploring psychological distress (Kessler-10), QoL with the EuroQOL-5D-5L (EQ-5D-5L), depression with the Neurological Disorders in Epilepsy scale (NDDIE), anxiety with the Hospital Anxiety and Depression Scalae-Anxiety (HADS-A), and epilepsy severity with the Global Assessment of the Severity of Epilepsy scale (GASE). Multivariate linear regression models assessed the relationship between measures of mental health and QoL and their potential predictors. Ethical approval was obtained from the Institute of Neurology, Psychiatry and Narcology of NAMS of Ukraine, Ukraine. RESULTS: Among 305 participants (mean age 38 years), 40% were female and 44% had to change residence because of the war. Seizures worsened during the war in 52% of those with active epilepsy and 42% of those with well-controlled epilepsy. Difficulties accessing health care and anti-seizure medications occurred in 25% and 34% of PWE, respectively, and was worse among those who were displaced. According to the mental health instruments, 46% suffered psychological distress, 62% experienced anxiety, 50% were depressed, and 59% rated their epilepsy as somewhat severe or worse. Statistically significant predictors of psychological distress, anxiety, and depression included female gender, more severe epilepsy, increased seizures during the war, and requiring mental health support. SIGNIFICANCE: The war significantly disrupted access to health care and availability of medication in PWE, who suffer from significant anxiety, depression, and psychological distress. We identify high-risk factors that can guide resource allocation for prevention and treatment.
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Functional movement disorders are not uncommon in neurological consultations, hospitals and emergency departments. Although the disorder can usually be recognized clinically, the communication of the diagnosis is often unsatisfactory. Those affected are indirectly accused of a lack of insight or openness but it is often the doctors who fail to formulate a coherent and comprehensible explanation of the underlying disorder. In this review an integrative model for the development of functional movement disorders is presented, which places the motor (and nonmotor) symptoms in a neuroscientific light. In addition, explanations and metaphors are presented that have proven helpful in conveying an understanding of the disorder.
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Trastornos de Conversión , Humanos , Trastornos de Conversión/diagnóstico , Trastornos de Conversión/fisiopatología , Trastornos de Conversión/terapia , Diagnóstico Diferencial , Modelos Neurológicos , Trastornos del Movimiento/diagnóstico , Trastornos del Movimiento/fisiopatologíaRESUMEN
Mental health comorbidities are prevalent and problematic in patients with seizures but often suboptimally managed. To address common gaps in care, the Integrated Mental Health Care Pathways Task Force of the International League Against Epilepsy (ILAE) Psychiatry Commission was tasked with providing education and guidance on the integration of mental health management (e.g., screening, referral, treatment) into routine seizure care. This report aims to describe a variety of established services in this area, with a specific focus on psychological care models. Services were identified by members of the ILAE Psychiatry Commission and authors of psychological intervention trials in epilepsy. A total of eight services met inclusion criteria and agreed to be showcased. They include three pediatric and five adult services located across four distinct ILAE regions (Europe, North America, Africa, Asia Oceania). The report describes the core operations, known outcomes, and implementation factors (i.e., barriers and facilitators) of these services. The report concludes with a set of practical tips for building successful psychological care services within seizure settings, including the importance of having local champions, clearly defining the scope of the service, and establishing sustainable funding models. The breadth of exemplars demonstrates how models tailored to the local environment and resources can be implemented. This report is an initial step to disseminate information regarding integrated mental health care within seizure care settings. Future work is needed to systematically examine both psychological and pharmacological care models and to further establish the evidence base in this area, especially around clinical impact, and cost-effectiveness.
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Epilepsia , Psiquiatría , Adulto , Humanos , Niño , Epilepsia/terapia , Epilepsia/psicología , Convulsiones/terapia , Comorbilidad , América del NorteRESUMEN
The biopsychosocial model was defined by George L. Engel to propose a holistic approach to patient care. Through this model, physicians can understand patients in their context to aid the development of tailored, individualized treatment plans that consider relevant biological, psychological, and social-cultural-spiritual factors impacting health and longitudinal care. In this article, we advocate for the use of the biopsychosocial model in neurology practice across outpatient and inpatient clinical settings. To do so, we first present the history of the biopsychosocial model, and its relationships to precision medicine and deep phenotyping. Then, we bring the neurologist up-to-date information on the components of the biopsychosocial clinical formulation, including predisposing, precipitating, perpetuating, and protective factors. We conclude by detailing illustrative neurological case examples using the biopsychosocial model, emphasizing the importance of considering relevant psychological and social factors to aid the delivery of patient-centered clinical care in neurology.
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Modelos Biopsicosociales , Médicos , Humanos , Atención Dirigida al PacienteRESUMEN
BACKGROUND: Anxiety disorders remain undiagnosed in routine clinical practice in up to two thirds of affected patients with epilepsy despite their significant impact on medical and psychosocial outcomes. The study objective was to translate and validate the German 8-item "brief Epilepsy Anxiety Survey Instrument" (brEASI) to facilitate effective screening for the presence of anxiety disorders in German-speaking patients. METHODS: After expert translation into German, the brEASI was completed by consecutive adult inpatients with epilepsy hospitalized for seizures at an academic reference epilepsy center. Patients also completed the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), the Generalized Anxiety Disorder scale (GAD-7) for external validity, and underwent a standardized interview (Mini-DIPS-OA) as a gold standard to determine the presence of an ICD-10 anxiety disorder (generalized anxiety disorder (GAD), panic disorder, agoraphobia, and social phobia). Receiver operating characteristics (ROC) were calculated to determine the diagnostic accuracy of the brEASI, including the associated area under the curve (AUC) statistics to determine the potential of the brEASI to identify ICD-10 anxiety disorders diagnosed by interview. For comparative purposes, these analyses were also conducted for the GAD-7. RESULTS: Of 80 recruited adult inpatients with epilepsy, 18 (23 %) were found to have a current anxiety disorder through standardized interview. In this study, both brEASI and GAD-7 showed a better diagnostic performance at a cutoff of >5 than at the previously reported cutoff values of >6 and >9, respectively. The AUC of the German brEASI was outstanding (AUC = 0.90, 95 % confidence interval (CI) = 0.82-0.96) for detecting all anxiety disorders and excellent for detecting non-GAD disorders (AUC = 0.85, CI = 0.76-0.92) at a cutoff of >5. At this optimal cutoff of >5 the brEASI demonstrated better sensitivity and specificity (89 % and 84 %) for identifying anxiety disorders than the GAD-7 (83 % and 74 %). The final German version of the brEASI is free to download at https://www.v-neuro.de/veroeffentlichungen/. CONCLUSION: The German version of the brEASI represents a valid and reliable epilepsy-specific anxiety screening instrument. A positive screening result should be followed by further diagnostic procedures. Appropriate therapeutic steps should be initiated if the presence of an anxiety disorder or other psychiatric disorders is confirmed.
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Trastornos de Ansiedad , Epilepsia , Adulto , Ansiedad , Humanos , Escalas de Valoración Psiquiátrica , Psicometría , Curva ROC , Reproducibilidad de los Resultados , Sensibilidad y EspecificidadRESUMEN
From shell shock tremors to TikTok tics, functional movement disorders have long been assumed to be motor expressions of emotional turmoil. However, psychodynamic explanations are increasingly complemented by neurophysiological findings, meaning that specialized physiotherapy is gaining in importance alongside psychotherapy. Still, there is no disease-specific outcome measure that adequately assesses patient-relevant aspects of this heterogeneous condition. Such a questionnaire was developed and its content was validated in a multistage development process. The relevance and comprehensibility of the items were first evaluated by a panel of experts and then by affected patients, and questions and possible response categories were adjusted accordingly. The resultant revised questionnaire yields good content-related validity and thus allows, for the first time, a quantification of the subjective complaints and implications associated with functional movement disorders. The next step will be a multicenter study to analyze the psychometric properties and factorial structure of this new instrument.
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Trastornos de Conversión , Humanos , Evaluación de Resultado en la Atención de Salud , Psicometría , Psicoterapia , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To determine the epidemiology of prolonged psychogenic non-epileptic seizures (pPNES) misdiagnosed as status epilepticus, as well as the risks associated with non-indicated treatment. METHODS: We performed an individual patient data analysis from the Rapid Anticonvulsant Medication Prior to Arrival Trial (RAMPART) and the Established Status Epilepticus Treatment Trial (ESETT) to assess incidence, patient characteristics and clinical course of misdiagnosed pPNES. RESULTS: Among 980 patients aged 8 years or older diagnosed and treated for status epilepticus in RAMPART and ESETT, 79 (8.1%) were discharged with a final diagnosis of pPNES. The relative incidence was highest in adolescents and young adults (20.1%). The typical female preponderance seen in that age bracket was not evident in children and older adults. Adverse effects, including respiratory depression and intubation, were documented in 26% of patients with pPNES receiving benzodiazepines in RAMPART and 33% of patients receiving additional second-line medication in ESETT. In ESETT, patients who were treated with benzodiazepines before hospital admission had higher rates of unresponsiveness and severe adverse effects than those treated after admission, suggesting cumulative effects of accelerated treatment momentum. Across trials, one in five patients with pPNES were admitted to an intensive care unit. CONCLUSIONS: Misdiagnosis and treatment of pPNES as status epilepticus are a common and widespread problem with deleterious consequences. Mitigating it will require training of emergency staff in semiological diagnosis. Status epilepticus response protocols should incorporate appropriate diagnostic re-evaluations at each step of treatment escalation, especially in clinical trials.
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Anticonvulsivantes/uso terapéutico , Convulsiones/diagnóstico , Estado Epiléptico/diagnóstico , Adolescente , Adulto , Factores de Edad , Anciano , Anciano de 80 o más Años , Niño , Errores Diagnósticos , Femenino , Humanos , Incidencia , Masculino , Persona de Mediana Edad , Convulsiones/tratamiento farmacológico , Estado Epiléptico/tratamiento farmacológico , Adulto JovenRESUMEN
BACKGROUND: This feasibility study applied the concept of daily systematic monitoring of personalized psychological variables and investigated patients' compliance in order to evaluate if its integration in outpatient psychotherapy is feasible and if patients found the development and daily application of personalized questionnaires user-friendly and useful. METHODS: A naturalistic sample of patients with epilepsy (PWE) was enrolled to participate in an outpatient psychotherapy program. A personalized process questionnaire was developed with each patient based on an individual psychological system's model at the outset of therapy. Daily time-stamped self-assessments were collected during outpatient psychotherapy. This process-monitoring was technically realized by an internet-based device for data collection and data analysis, the Synergetic Navigation System (SNS). The reflection of person-specific time series informed by patients' replies to their personalized process questionnaire was integrated in the therapy process. Compliance rates were assessed during a period of six months (i.e., 180â¯days) after the first entry of the questionnaire [compliance rateâ¯=â¯(number of completed questionnaires/180)â¯×â¯100]. User-friendliness and usefulness of this process monitoring were evaluated quantitatively. RESULTS: Twenty patients [15 women/5 men, median age 48â¯years (range 23-73â¯years)] were recruited. Compliance rates were high (median: 93%, range 31-100%) among the participants. Participants reported a high overall satisfaction with the application and user-friendliness of SNS. CONCLUSION: The results support the feasibility of high-frequency monitoring of personalized psychological processes during outpatient psychotherapy. Repeated daily assessments of a personalized questionnaire yield highly resolved, equidistant time series data, which gives insight into individual psychological processes during outpatient psychotherapy.
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Pacientes Ambulatorios , Convulsiones , Adulto , Anciano , Estudios de Factibilidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Psicoterapia , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: There is great scientific and clinical interest in the effective integration of psychological treatments into comprehensive epilepsy care to optimize treatment outcomes and psychosocial functioning in people with epilepsy. Stepped care is a promising approach to accommodate personalized psychotherapeutic care in academic and regular outpatient settings. It aims at providing patients with the most adequate treatment duration, number of sessions, and treatment method while systematically monitoring their treatment processes. METHODS: This is an uncontrolled feasibility study of process-oriented and personalized psychotherapeutic care for epilepsy in a naturalistic setting. The objective of this study was to evaluate individual changes of health-related quality of life (QOLIE-31) and psychiatric comorbidity (BDI-II, BSI) in participants by applying the concept of the reliable change index (RCI) to outcomes that were obtained at baseline and six months after the beginning of the intervention. Additionally, we assessed the relationship between outcome scores, the number of attended sessions, and history of childhood trauma by linear regression models. RESULTS: Twenty patients [15 women/5 men, median age 48â¯years (range: 23-73â¯years)] were recruited. The median number of scheduled sessions was 11 (range: 6-22); there were no drop-outs. After psychotherapy quality of life (QOLIE-31), global distress (BSI) and depression (BDI-II) scores improved significantly (p-values: QOLIE-31: 0.03; BSI: 0.01; BDI-II: 0.01). The largest improvements were achieved for the emotional well-being subscale of the QOLIE-31 (47%, p-value: 0.02), the global severity index of the BSI (83%), and depression severity (BDI-II) (60%). Linear regression models did not reveal any significant association between interim changes, number of attended treatment sessions, and history of childhood trauma. CONCLUSION: The results suggest that process-oriented and personalized psychotherapeutic has low attrition and results in improved quality of life and reduced psychiatric symptoms in people with epilepsy. Our findings indicate that responsiveness to psychotherapy is not dependent on the number of attended treatment sessions. Participants with childhood trauma did not need more treatment sessions to achieve an improvement. More research is needed to understand and address mechanisms and precursors of responsiveness to psychotherapy.
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BACKGROUND: Given the significant impact epilepsy may have on the health-related quality of life (HRQOL) of individuals with epilepsy and their families, there is increasing clinical interest in evidence-based psychological treatments, aimed at enhancing psychological and seizure-related outcomes for this group. This is an updated version of the original Cochrane Review published in Issue 10, 2017. OBJECTIVES: To assess the impact of psychological treatments for people with epilepsy on HRQOL outcomes. SEARCH METHODS: For this update, we searched the following databases on 12 August 2019, without language restrictions: Cochrane Register of Studies (CRS Web), which includes randomized or quasi-randomized controlled trials from the Specialized Registers of Cochrane Review Groups including Epilepsy, the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE (Ovid, 1946 to 09 August 2019), and PsycINFO (EBSCOhost, 1887 onwards), and from PubMed, Embase, ClinicalTrials.gov, and the World Health Organization International Clinical Trials Registry Platform (ICTRP). We screened the references from included studies and relevant reviews, and contacted researchers in the field for unpublished studies. SELECTION CRITERIA: We considered randomized controlled trials (RCTs) and quasi-RCTs for this review. HRQOL was the main outcome. For the operational definition of 'psychological treatments', we included a broad range of skills-based psychological treatments and education-only interventions designed to improve HRQOL, seizure frequency and severity, as well as psychiatric and behavioral health comorbidities for adults and children with epilepsy. These psychological treatments were compared to treatment as usual (TAU), an active control group (such as social support group), or antidepressant pharmacotherapy. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane. MAIN RESULTS: We included 36 completed RCTs, with a total of 3526 participants. Of these studies, 27 investigated skills-based psychological interventions. The remaining nine studies were education-only interventions. Six studies investigated interventions for children and adolescents, three studies investigated interventions for adolescents and adults, and the remaining studies investigated interventions for adults. Based on satisfactory clinical and methodological homogeneity, we pooled data from 11 studies (643 participants) that used the Quality of Life in Epilepsy-31 (QOLIE-31) or other QOLIE inventories (such as QOLIE-89 or QOLIE-31-P) convertible to QOLIE-31. We found significant mean changes for the QOLIE-31 total score and six subscales (emotional well-being, energy and fatigue, overall QoL, seizure worry, medication effects, and cognitive functioning). The mean changes in the QOLIE-31 total score (mean improvement of 5.23 points, 95% CI 3.02 to 7.44; P < 0.001), and the overall QoL score (mean improvement of 5.95 points, 95% CI 3.05 to 8.85; P < 0.001) exceeded the threshold of minimally important change (MIC: total score: 4.73 points; QoL score: 5.22 points), indicating a clinically meaningful postintervention improvement in HRQOL. We downgraded the certainty of the evidence provided by the meta-analysis due to serious risks of bias in some of the included studies. Consequently, these results provided moderate-certainty evidence that psychological treatments for adults with epilepsy may enhance overall HRQOL. AUTHORS' CONCLUSIONS: Implications for practice: Skills-based psychological interventions improve HRQOL in adults and adolescents with epilepsy. Adjunctive use of skills-based psychological treatments for adults and adolescents with epilepsy may provide additional benefits in HRQOL when these are incorporated into patient-centered management. We judge the evidence to be of moderate certainty. IMPLICATIONS FOR RESEARCH: Investigators should strictly adhere to the CONSORT guidelines to improve the quality of reporting on their interventions. A thorough description of intervention protocols is necessary to ensure reproducibility. When examining the effectiveness of psychological treatments for people with epilepsy, the use of standardized HRQOL inventories, such as the Quality of Life in Epilepsy Inventories (QOLIE-31, QOLIE-31-P, and QOLIE-89) would increase comparability. Unfortunately, there is a critical gap in pediatric RCTs and RCTs including people with epilepsy and intellectual disabilities. Finally, in order to increase the overall quality of RCT study designs, adequate randomization with allocation concealment and blinded outcome assessment should be pursued. As attrition is often high in research that requires active participation, an intention-to-treat analysis should be carried out. Treatment fidelity and treatment competence should also be assessed. These important dimensions, which are related to 'Risk of bias' assessment, should always be reported.
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At the level of individual experience, the relation between electroencephalographic (EEG) phenomena and subjective ratings of psychological states is poorly examined. This study investigated the correlation of quantitative EEG markers with systematic high-frequency monitoring of psychological states in patients admitted to the epilepsy monitoring unit (EMU). We used a digital questionnaire, including eight standardized items about stress, energy level, mood, ward atmosphere, seizure likelihood, hopefulness/frustration, boredom, and self-efficacy. Self-assessments were collected four times per day, in total 15 times during the stay in the EMU. We extracted brainrate, Hjorth parameters, Hurst exponent, Wackermann parameters, and power spectral density from the EEG. We performed correlation between these quantitative EEG measures and responses to the 8 items and evaluated their significance on single subject and on group level. Twenty-one consecutive patients (12 women/9 men, median age: 29 years, range: 18-74â¯years) were recruited. On group level, no significant correlations were found whereas on single-subject level, we found significant correlations for 6 out of 21 patients. Most significant correlations were found between Hjorth parameters and items that reflect changes in mood or stress. This study supports the feasibility of correlating quantitative EEG measures with psychological states in routine EMU settings and emphasizes the need for single-subject statistics when assessing aspects with high interindividual variance. Future studies should select samples with high within-subject variability of psychological states and examine a subsample with patients encountering a critical number of seizures needed in order to relate the psychological states to the ultimate question: Are psychological states potential indicators for seizure likelihood?
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Electroencefalografía , Epilepsia , Unidades Hospitalarias , Monitorización Neurofisiológica , Adolescente , Adulto , Anciano , Biomarcadores , Epilepsia/diagnóstico , Epilepsia/fisiopatología , Epilepsia/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Adulto JovenRESUMEN
BACKGROUND: Generic or even disease-specific quality of life measures are unlikely to be equally responsive to different epilepsy treatment modalities, such as pharmacotherapy, surgery, or psychotherapy. The purpose of the present study was to summarize the development of a patient-reported outcome measure (PROM) designed to be particularly sensitive to change mediated by psychotherapeutic interventions in people with seizures. METHODS: The development of this instrument involved seven steps: (1) Development of a candidate item set based on the outcome of previous qualitative research, (2) initial quantitative-descriptive study yielding an assessment of content validity by clinical experts, (3) qualitative-descriptive posttherapy cognitive debriefing interviews with patients with epileptic and/or nonepileptic seizures (NES), (4) English translation, (5) elicitation of qualitative feedback from international experts, (6) assessment of internal consistency and correlation with similar previously validated generic and epilepsy-specific measures in a pilot study, and (7) final expert content validity rating. RESULTS: (1) The candidate item set comprised 29 stem items; five of which were followed by a follow-up (FU) item that refers to the statement of the stem item. (2) Eight clinical experts assessed content validity. Informed by rating and experts' qualitative comments, 15 items remained unchanged, eleven underwent substantial revisions, three were excluded, and six added. (3) Cognitive debriefing interviews were conducted with 14 patients with epilepsy and/or NES. Based on the interviewees' feedback, 29 of 32 items remained unchanged, two were excluded, one reworded, and four added. (4) The forwards-backwards English translation prompted substantial revision of two items because the verbatim back translation of the corresponding English items was conceptually more convincing than the original German wording. (5) The international experts identified problems with item comprehensibility/clarity of four stem and three FU items that were subsequently reworded. Ten items were added to incorporate their qualitative feedback resulting in a total of 44 items. (6) Thirty-one patients with epilepsy participated in the pilot study. The overall internal consistency of the self-Efficacy, Assertiveness, Social support, self-awareness, and hElpful thinking in people with seizures (EASE) was very good (αâ¯=â¯0.92). Analysis at item-level revealed problems with inverted and self-evident items. Based on this analysis, three items were eliminated and two items were revised (one FU item was turned into a stem item) resulting in a total of 42 items. (7) The second content validity rating showed final item-content validity indices (I-CVIs) between 0.38 and 1 and an excellent mean CVI of 0.92 at scale level (S-CVI/ave). Fourteen stem items were substantially revised by incorporating the experts' qualitative feedback, three items with low I-CVIs were excluded, and one item was added. The final questionnaire consisted of 40 stem items; eight of which include at least one FU item. CONCLUSION: Based on these results, the EASE is valid in terms of content, internally consistent, clear, and acceptable to patients with seizures. The measure has now been developed to the stage at which the validity and reliability as well as the psychometric properties and factorial structure of the new instrument can be assessed in larger patient groups in a prospective clinical study.
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Medición de Resultados Informados por el Paciente , Psicoterapia/métodos , Calidad de Vida/psicología , Convulsiones/psicología , Convulsiones/terapia , Adulto , Anciano , Epilepsia/psicología , Epilepsia/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Estudios Prospectivos , Investigación Cualitativa , Reproducibilidad de los Resultados , Autoeficacia , Encuestas y Cuestionarios , Adulto JovenRESUMEN
OBJECTIVE: Given the significant impact epilepsy can have on health-related quality of life (HRQoL) of individuals with this condition and their families, there is great clinical interest in evidence-based psychological treatments aimed at enhancing well-being in people with epilepsy (PWE). An evaluation of the current evidence is needed to assess the effects of psychological treatments for PWE on HRQoL outcomes to inform future therapeutic recommendations and research designs. METHODS: The operational definition of psychological treatments included a broad range of interventions that use psychological or behavioral techniques designed to improve HRQoL, psychiatric comorbidities, and seizure frequency and severity for adults and children with epilepsy. A systematic literature search was conducted in line with Cochrane criteria for randomized controlled trials (RCTs) and quasi-RCTs investigating psychological treatments and using HRQoL outcome measures as primary or secondary outcome measures. Standard methodological procedures required by the Cochrane Collaboration were used for data collection and analysis. RESULTS: Twenty-four completed RCTs were included in this review (2439 participants). Based on satisfactory methodological homogeneity, data from 9 studies (468 participants) providing Quality of Life in Epilepsy-31 (QOLIE-31) outcomes were pooled for meta-analyses, showing significant mean changes for QOLIE-31 total score and 6 subscales. The significant mean changes of QOLIE-31 total score (mean improvement of 5.68 points; 95% confidence interval = 3.11-8.24, P < .0001) and 3 subscales (emotional well-being, energy/fatigue, overall quality of life [QoL]) exceeded the threshold of minimally important change, indicating a clinically meaningful postintervention improvement of QoL. Overall, the meta-analysis quality of evidence was characterized as "moderate" due to the risk of bias present in 8 of the 9 included studies (Handbook for Systematic Reviews of Interventions, Version 5.1.0, 2011, Chapters 8 and 12). A narrative synthesis was conducted for all trials and outcomes that were not entered in the meta-analysis. SIGNIFICANCE: These results provide moderate-quality evidence that psychological treatments for adults with epilepsy may enhance HRQoL in people with epilepsy.
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Epilepsia , Calidad de Vida , Adulto , Sesgo , Niño , Fatiga , Humanos , Salud MentalRESUMEN
Given the significant impact that psychosocial factors and epilepsy treatments can have on the health-related quality of life (HRQOL) of individuals with epilepsy and their families, there is great clinical interest in the role of psychological evaluation and treatments to improve HRQOL and comorbidities. Therefore, the International League Against Epilepsy (ILAE) charged the Psychology Task Force with the development of recommendations for clinical care based on evaluation of the evidence from their recent Cochrane review of psychological treatments in individuals with epilepsy. The literature search for a recent Cochrane review of randomized controlled trials investigating psychological treatments for individuals with epilepsy constitutes the key source of evidence for this article. To provide practical guidance to service providers, we provide ratings on study research designs based on (1) the American Academy of Neurology's Level of Evidence system and (2) the Grading of Recommendations, Assessment, Development, and Evaluation system. This paper is the culmination of an international collaboration process involving pediatric and adult psychologists, neurologists, psychiatrists, and neuropsychiatrists. The process and conclusions were reviewed and approved by the ILAE Executive Committee. The strongest evidence for psychological interventions was identified for the most common mental health problems, including depression, neurocognitive disturbances, and medication adherence. Psychological interventions targeting the enhancement of HRQOL and adherence and a decrease in comorbidity symptoms (anxiety, depression) should be incorporated into comprehensive epilepsy care. There is a range of psychological strategies (ie, cognitive behavioral therapy and mindfulness-based therapies) that show promise for improving the lives of persons with epilepsy, and clinical recommendations are provided to assist epilepsy health care providers in treating the comorbidities and challenges associated with epilepsy and its treatments.
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Epilepsia/psicología , Medicina Basada en la Evidencia , Psicoterapia , Adulto , Anticonvulsivantes/efectos adversos , Anticonvulsivantes/uso terapéutico , Trastornos de Ansiedad/psicología , Trastornos de Ansiedad/terapia , Niño , Comorbilidad , Trastorno Depresivo/psicología , Trastorno Depresivo/terapia , Epilepsia/terapia , Humanos , Comunicación Interdisciplinaria , Colaboración Intersectorial , Cumplimiento de la Medicación/psicología , Trastornos Neurocognitivos/psicología , Trastornos Neurocognitivos/terapia , Calidad de Vida/psicología , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
BACKGROUND: Psychological interventions may enhance health-related quality of life in people with epilepsy. The concepts of self-efficacy and mastery may be particularly relevant in the context of epilepsy. To date, the investigation of psychological interventions has not included a qualitative analysis of the effects of such interventions on the interrelation between mastery and general and epilepsy-specific self-efficacy. This qualitative study aimed to explore the relationship between the lived experiences of these concepts in people with epilepsy who participated in a resource-oriented and mindfulness-based psychotherapeutic intervention delivered on a one-to-one basis in an outpatient setting. METHODS: Semi-structured pre- and postintervention interviews were conducted with people with epilepsy who participated in a six-month resource-oriented and mindfulness-based intervention. The formulation of intervention goals was based on the preintervention interviews. The intervention involved regular one-to-one interactions with the therapist, journal-keeping, and mindfulness-based relaxation. Qualitative content analysis of pre- and posttherapy interviews was conducted to characterize changes in subjective experiences. RESULTS: Nine people with epilepsy aged 18-59â¯years participated in 9 to 22 (median 13) sessions. The following six main themes emerged: (A) Encouragement of individual solutions, (B) Awareness of the link of personal traits with seizure-related worries, (C) How to develop self-efficacy, (D) Shaping everyday life in a way that is good for oneself (general self-efficacy), (E) Coping with seizures (seizure-related self-efficacy), (F) Epilepsy as a means of increasing self-knowledge and control over one's life (sense of mastery). The patients' development of self-efficacy was motivated by their personal initial goals and facilitated by the encouragement to find individual solutions and an increased awareness of the link of personal traits with seizure-related worries. A sense of mastery only emerged through the development of general self-efficacy and as a result of the active self-examination prompted by the challenge of living with epilepsy. CONCLUSION: The qualitative differences observed before and after a psychotherapeutic intervention for individuals with epilepsy increase our understanding of the complex process of psychotherapy-associated change involving self-efficacy and mastery and highlight the contribution that qualitative research approaches can make.
Asunto(s)
Epilepsia/psicología , Atención Plena , Psicoterapia , Calidad de Vida/psicología , Convulsiones/psicología , Autoeficacia , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Adulto JovenRESUMEN
BACKGROUND: Admission to the epilepsy monitoring unit (EMU) for long-term video-electroencephalography (EEG) monitoring (VEEG) constitutes the gold standard for seizure diagnosis and presurgical evaluation. This study applied the concept of a high-frequency systematic monitoring of psychological states and tested patients' compliance in order to evaluate if its integration in the EMU is feasible and if patients benefit from the graphically underpinned discussion of their EMU stay-related cognitions and emotions. METHODS: The process-monitoring is technically realized by an internet-based device for data collection and data analysis, the Synergetic Navigation System (SNS). A convenient sample was enrolled: All eligible patients who were admitted to the EMU of the Department of Neurology, Christian Doppler Medical Center, Salzburg, Austria, between November 6th 2017 and January 26th 2018 were approached and recruited upon consent. After a short resource-oriented interview, each enrolled patient was provided with a tablet. The daily questionnaire included eight standardized and up to three personalized items. Self-assessments were collected every 5â¯h prior to meal times (6:30â¯am, 11:30â¯am, and 4:30â¯pm) and at 9:30â¯pm. The detailed visualizations of the patients' replies were discussed with the participants during a feedback session at the end of the EMU stay. RESULTS: Twenty-one patients (12 women/9 men, median age 29â¯years [range 18-74â¯years]) were consecutively recruited (72% of all eligible patients). Compliance rates were high (median: 82%, range 60%-100%) among the respondents. Mood correlated strongly with hopefulness (râ¯=â¯0.71) and moderately with energy (râ¯=â¯0.63) in all patients. When correlating the intraindividual medians of the process questionnaire time series with the pretest total scores, energy correlated moderately and negatively with the Perceived Stress Scale (PSS) (râ¯=â¯-0.45), while self-efficacy correlated moderately and negatively with the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) total scores in all patients (râ¯=â¯-0.5). Nine patients (43%) reported that they learned something meaningful about themselves after the feedback discussion of their individual time series. CONCLUSION: The results support the feasibility of high-frequency monitoring of psychological states and processes in routine EMU settings. Repeated daily collections four times per day of psychological surveys allow for the assessment of highly resolved, equidistant time series data, which gives insight into psychological states and processes during EMU admission.
Asunto(s)
Prestación Integrada de Atención de Salud/organización & administración , Epilepsia/psicología , Monitoreo Fisiológico , Convulsiones/psicología , Adolescente , Adulto , Anciano , Austria , Electroencefalografía , Epilepsia/fisiopatología , Femenino , Unidades Hospitalarias/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Cooperación del Paciente/estadística & datos numéricos , Proyectos Piloto , Encuestas y Cuestionarios , Adulto JovenRESUMEN
The International League Against Epilepsy (ILAE) Neuropsychiatry commission and United States Institute of Medicine report both identified cognitive and psychological comorbidities as a significant issue for individuals with epilepsy, with rates as high as 60%. However, there is a paucity of evidence-based treatments for many psychological conditions (e.g., learning disorders, cognitive disorders, behavioral disorders). Because of inherent challenges in the implementation of psychological therapy trials and specific considerations for the population with epilepsy, the focus of the current review was to provide guidance and recommendations to conduct psychological trials for individuals with epilepsy. Several key areas will be discussed, including selection of patients, trial design, psychological intervention considerations, outcomes and evaluation of results, publication of trial results, and special issues related to pediatric clinical trials. Rigorously designed psychological therapy trials will set the stage for evidence-based practice in the care of individuals with epilepsy, with the goal of improving seizures, side effects, and HRQOL.
Asunto(s)
Ensayos Clínicos como Asunto , Epilepsia/complicaciones , Trastornos Mentales/terapia , Proyectos de Investigación , Epilepsia/psicología , Humanos , Trastornos Mentales/complicaciones , Trastornos Mentales/psicologíaRESUMEN
BACKGROUND: Given the significant impact epilepsy can have on the health-related quality of life (HRQoL) of individuals with epilepsy and their families, there is great clinical interest in evidence-based psychological treatments, aimed at enhancing psychological well-being in people with epilepsy. A review of the current evidence was needed to assess the effects of psychological treatments for people with epilepsy on HRQoL outcomes, in order to inform future therapeutic recommendations and research designs. OBJECTIVES: To assess the effects of psychological treatments for people with epilepsy on HRQoL outcomes. SEARCH METHODS: We searched the following databases on 20 September 2016, without language restrictions: Cochrane Epilepsy Group Specialized Register, CENTRAL, MEDLINE PsycINFO, ClinicalTrials.gov, WHO International Clinical Trials Registry Platform (ICTRP). We screened the references from included studies and relevant reviews, and contacted researchers in the field for unpublished studies. SELECTION CRITERIA: We considered randomized controlled trials (RCTs) and quasi-RCTs for this review. HRQoL was the main outcome measure. For the operational definition of 'psychological treatments', we included a broad range of treatments that used psychological or behavioral techniques designed to improve HRQoL, seizure frequency and severity, and psychiatric comorbidities for adults and children with epilepsy, compared to treatment as usual (TAU) or an active control group. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by the Cochrane Collaboration. MAIN RESULTS: We included 24 completed RCTs, with a total of 2439 participants. Eleven studies investigated psychological interventions, such as cognitive, behavioral, and mindfulness-based interventions. The remaining studies were classified as educational interventions (N = 7), self-management interventions (N = 3), adherence interventions (N = 1), and mixed interventions (N = 2). Two studies investigated interventions for children and adolescents, and five studies investigated interventions for adolescents and adults. Based on satisfactory clinical and methodological homogeneity, we pooled data from six adult studies, two studies on adolescents and adults, and one on adolescents and young adults (468 participants) for HRQoL, measured with the Quality of Life in Epilepsy-31 (QOLIE-31). We found significant mean changes for the QOLIE-31 total score and six subscales (emotional well-being, energy and fatigue, overall QoL, seizure worry, medication effects, and cognitive functioning). The mean changes of the QOLIE-31 total score (mean improvement of 5.68 points (95% CI 3.11 to 8.24; P < 0.0001), and three subscales, emotional well-being (mean improvement of 7.03 points (95% CI 2.51 to 11.54; P = 0.002); energy and Fatigue (mean improvement of 6.90 points (95% CI 3.49 to 10.31; P < 0.0001); and overall QoL (mean improvement of 6.47 points (95% CI 2.68 to 10.25; P = 0.0008) exceeded the threshold of minimally important change (MIC), indicating a clinically meaningful post-intervention improvement of QoL. We downgraded the quality of the evidence provided by the meta-analysis because of serious risk of bias in some of the included studies. Consequentially, these results provided evidence of moderate quality that psychological treatments for adults with epilepsy may enhance overall QoL in people with epilepsy. AUTHORS' CONCLUSIONS: Implications for practice: Psychological interventions and self-management interventions improved QoL, and emotional well-being, and reduced fatigue in adults and adolescents with epilepsy. Adjunctive use of psychological treatments for adults and adolescents with epilepsy may provide additional benefits to QoL in those who incorporate patient-centered management. IMPLICATIONS FOR RESEARCH: Authors should strictly adhere to the CONSORT guidelines to improve the quality of reporting on their interventions. A thorough description of the intervention protocol is necessary to ensure reproducibility.When researching psychological treatments for people with epilepsy, the use of Quality of Life in Epilepsy Inventories (QOLIE-31, QOLIE-31-P, and QOLIE-89) would increase comparability. There is a critical gap in pediatric RCTs for psychological treatments, particularly those that use an epilepsy-specific measure of HRQoL.Finally, in order to increase the overall quality of study designs, adequate randomization with allocation concealment and blinded outcome assessment should be pursued when conducting RCTs. As attrition is often high in research that requires active participant participation, an intention-to-treat analysis should be carried out.