Social and family characteristics of Hispanics with epilepsy

AbstractThe purpose of this study is to determine how acculturation, social support, family emotional involvement, perceived family criticism and stigma are associated with epilepsy self-efficacy and depression. A principal components analysis (PCA) was used to describe the salience of these characteristics within a sample of Hispanics with epilepsy.A total of 50 Hispanic adults of Mexican descent identified in our Epilepsy Clinic participated in this study. The PCA identified four distinct types, two were relatively culture-free, and two were distinctly culturally oriented. The first non-culture affiliated type described a well-adjusted group of individuals that tended to be males with moderate self-efficacy, who received social support, and who were unlikely to have depression or feel stigmatized. The second non-culture affiliated type described a dimension in which family emotional involvement tended to co-occur with perceived criticism. The Anglo-oriented group had a family environment that did not appear to criticize the individual with epilepsy and had good self-efficacy. The Mexican-oriented group had high self-efficacy and was unlikely to have depression. Results suggest that acculturation variables must be taken into consideration among ethnic groups because social, psychological and acculturation variables interact in complex ways. Additionally, it is clear that a diagnosis of epilepsy does not automatically lead to poor quality of life, stigma, or depression

Experiences of Using the Mindset Self-Management Mobile Health App Among Hispanic Patients: Results of a Qualitative Study

BACKGROUND: Interventions focusing on epilepsy self-management (ESM) are vital for promoting the health of people living with epilepsy. E-technology and mobile health (mHealth) tools are becoming increasingly integrated into practice to promote self-management strategies for chronic diseases, enhance care delivery, and reduce health disparities. Management Information and Decision Support Epilepsy Tool (MINDSET), a bilingual decision support tool (available in English and Spanish), was found to be both feasible and effective in facilitating goal-based ESM in the clinic. PURPOSE: To assess the experience of using MINDSET as an ESM intervention among Hispanic patients with epilepsy to inform future interventional studies. METHODS: This study used a Qualitative Descriptive (QD) framework to provide a rich and straightforward description of patients\u27 subjective experiences using MINDSET. Participants were enrolled in the intervention group of a larger parent study (RCT) to assess the efficacy of MINDSET among Hispanic People with Epilepsy (PWE). The purposive, convenient, criterion-based sample for this qualitative analysis comprised of 42 patients who agreed to participate in a semi-structured interview at the end of the larger RCT. This RCT was conducted between August 2017 and January 2019. Spanish and English-speaking Hispanic adult patients (n = 94) with epilepsy in Arizona (n = 53) and Texas (n = 41) were randomly assigned within 6 neurology clinics to treatment (MINDSET plus Usual Care, hereafter referred to as MINDSET; n = 46) and comparison (Usual Care Only; n = 48) conditions. RESULTS: Patient demographics, epilepsy conditions, and ESM behavioral characteristics were representative of the intervention group. Study participants were Hispanic, mainly of Mexican descent (94 %), with a mean age of 39 years, mostly female (53 %), and most of the participants reported having had one or more seizures per month (54 %). The MINDSET intervention revealed five ESM themes: (1) Awareness and Realization of Epilepsy Self-Management, (2) Communication and Partnership with Health Care Providers HCP, (3) Epilepsy Self-Management and Quality of Life, (4) Seizure Control, and (5) Optimism and Agency. CONCLUSION: The participants who used MINDSET as a self-management intervention reported an overall positive experience. Qualitative data in this study show that MINDSET is a valuable ESM tool for Hispanic patients with epilepsy. Findings from this qualitative study were consistent with results from a larger parent study that recognized MINDSET as an effective platform for improving epilepsy self-management adherence

Acute Exposure to Terrestrial Trunked Radio (TETRA) has effects on the electroencephalogram and electrocardiogram, consistent with vagal nerve stimulation

BACKGROUND: Terrestrial Trunked Radio (TETRA) is a telecommunications system widely used by police and emergency services around the world. The Stewart Report on mobile telephony and health raised questions about possible health effects associated with TETRA signals. This study investigates possible effects of TETRA signals on the electroencephalogram and electrocardiogram in human volunteers. METHODS: Blinded randomized provocation study with a standardized TETRA signal or sham exposure. In the first of two experiments, police officers had a TETRA set placed first against the left temple and then the upper-left quadrant of the chest and the electroencephalogram was recorded during rest and active cognitive processing. In the second experiment, volunteers were subject to chest exposure of TETRA whilst their electroencephalogram and heart rate variability derived from the electrocardiogram were recorded. RESULTS: In the first experiment, we found that exposure to TETRA had consistent neurophysiological effects on the electroencephalogram, but only during chest exposure, in a pattern suggestive of vagal nerve stimulation. In the second experiment, we observed changes in heart rate variability during exposure to TETRA but the electroencephalogram effects were not replicated. CONCLUSIONS: Observed effects of exposure to TETRA signals on the electroencephalogram (first experiment) and electrocardiogram are consistent with vagal nerve stimulation in the chest by TETRA. However given the small effect on heart rate variability and the lack of consistency on the electroencephalogram, it seems unlikely that this will have a significant impact on health. Long-term monitoring of the health of the police force in relation to TETRA use is on-going

Psychosocial Impact of Epilepsy in Older Adults

Objective: The purpose of our study was to describe the quality of life of older adults with seizures or epilepsy and compare its psychosocial impact between those who were new diagnosed and those diagnosed before the age of 65. Methods: In-depth face to face interviews with open ended questions were conducted with two participant groups: Incident group: 42 older adults (>65 years) with new onset or newly diagnosed after age of 65; and Prevalent group: 15 older adults (>65 years) diagnosed before age of 65. Interviews were reviewed and coded using a list of themes and results were compared between the two groups. Eight topics were selected from the participants’ responses to questions about the psychosocial impact of epilepsy and seizures. The topics were then analyzed and compared between the two groups. Results: The topics analyzed were: Emotional and physical impact, significant life changes, co-morbidities, information gathering, stigma, AED side effects, changes in relationships and attitude toward diagnosis. Conclusion: We concluded that the age at onset and duration does seem to have a negative correlation with health related quality of life. However, the perceived health status of older adults with chronic epilepsy was significantly better and reflected in their more positive approach to the diagnosis of seizures or epilepsy probably because they have had a longer opportunity to learn to cope with their diagnosis

Essential services, personnel, and facilities in specialized epilepsy centers-Revised 2010 guidelines

Summary This document was developed by the members of the Committee to Revise the Guidelines for Services, Personnel, and Facilities at Specialized Epilepsy Centers. After discussions with the general membership they were adopted by the Board of the National Association of Epilepsy Centers. The Guidelines will be reviewed and updated when considered necessary by the Board. © 2010 International League Against Epilepsy

Epilepsy surgery in the United States: Analysis of data from the National Association of Epilepsy Centers

To examine trends in epilepsy-related surgical procedures performed at major epilepsy centers in the US between 2003 and 2012, and in the service provision infrastructure of epilepsy centers over the same time period. We analyzed data from the National Association of Epilepsy Centers' (NAEC) annual surveys. The total annual figures, annual average figures per center and annual rates of each surgical procedure based on US population numbers for that year were calculated. Additional information on center infrastructure and manpower was also examined. The number of the NAEC's level 3 and level 4 epilepsy centers submitting annual survey reports increased from 37 centers in 2003 to 189 centers in 2012. The average reported number of Epilepsy Monitoring Unit (EMU) beds per center increased from 7 beds in 2008 to 8 beds in 2012. Overall annual EMU admission rates doubled between 2008 and 2012 but the average number of EMU admissions and epilepsy surgeries performed per center declined over the same period. The annual rate of anterior temporal lobectomies (ATL) for mesial temporal sclerosis (MTS) declined by >65% between 2006 and 2010. The annual rate of extratemporal surgery exceeded that of ATL for MTS from 2008 onwards, doubled between 2007 and 2012 and comprised 38% of all resective surgeries in 2012. Vagus nerve stimulator implant rates consistently increased year on year and exceeded resective surgeries in 2011 and 2012. The last decade has seen a major change in the US epilepsy surgery landscape. Temporal lobectomies, particularly for MTS, have declined despite an increase in EMU admissions. On the other hands, case complexity correspondingly increased as evidenced by more extratemporal surgery, intracranial recordings and palliative procedures

Indications and methodology for video-electroencephalographic studies in the epilepsy monitoring unit

Wiley Periodicals, Inc. © 2017 International League Against Epilepsy Although the epilepsy and neurology communities have position papers on a number of topics pertaining to epilepsy diagnosis and management, no current paper exists for the rationale and appropriate indications for epilepsy monitoring unit (EMU) evaluation. General neurologists, hospital administrators, and insurers also have yet to fully understand the role this type of testing has in the diagnosis and management of individuals with paroxysmal neurologic symptoms. This review outlines the indications for long-term video-electroencephalography (VEEG) for typical elective admissions to a specialized inpatient setting. The common techniques used in EMUs to obtain diagnostic information are reviewed. The added benefit of safety measures and clinical testing above that available for routine or long-term ambulatory electroencephalography is also discussed. The indications for admission to the EMU include differential diagnosis of paroxysmal spells, characterization of seizure types, presurgical epilepsy evaluations, seizure quantification, monitoring medication adjustment in a safe setting, and differentiation between seizures and side effects. We conclude that the appropriate use of this specialized testing can lead to an early and correct diagnosis in a variety of clinical circumstances. The EMU evaluation is considered the gold standard test for the definitive diagnosis of epilepsy and seizure-like spells