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  • 1. Beghi, Ettore
    et al.
    Carpio, Arturo
    Forsgren, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för farmakologi och klinisk neurovetenskap, Neurologi.
    Hesdorffer, Dale C
    Malmgren, Kristina
    Sander, Josemir W
    Tomson, Torbjorn
    Hauser, W Allen
    Recommendation for a definition of acute symptomatic seizure2010Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 51, nr 4, s. 671-675Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Acute symptomatic seizures must be distinguished from unprovoked seizures and separately categorized for epidemiologic purposes. These recommendations are based upon the best available data at the time of this report. Systematic studies should be undertaken to better define the associations in question, with special reference to metabolic and toxic insults, for which the time window for the occurrence of an acute symptomatic seizure and the absolute values for toxic and metabolic dysfunction still require a clear identification.

  • 2. Fisher, Robert S.
    et al.
    Acevedo, Carlos
    Arzimanoglou, Alexis
    Bogacz, Alicia
    Cross, J. Helen
    Elger, Christian E.
    Engel, Jerome, Jr.
    Forsgren, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för farmakologi och klinisk neurovetenskap, Klinisk neurovetenskap.
    French, Jacqueline A.
    Glynn, Mike
    Hesdorffer, Dale C.
    Lee, B. I.
    Mathern, Gary W.
    Moshe, Solomon L.
    Perucca, Emilio
    Scheffer, Ingrid E.
    Tomson, Torbjorn
    Watanabe, Masako
    Wiebe, Samuel
    ILAE official report: a practical clinical definition of epilepsy2014Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 55, nr 4, s. 475-482Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Epilepsy was defined conceptually in 2005 as a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures. This definition is usually practically applied as having two unprovoked seizures >24h apart. The International League Against Epilepsy (ILAE) accepted recommendations of a task force altering the practical definition for special circumstances that do not meet the two unprovoked seizures criteria. The task force proposed that epilepsy be considered to be a disease of the brain defined by any of the following conditions: (1) At least two unprovoked (or reflex) seizures occurring >24h apart; (2) one unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10years; (3) diagnosis of an epilepsy syndrome. Epilepsy is considered to be resolved for individuals who either had an age-dependent epilepsy syndrome but are now past the applicable age or who have remained seizure-free for the last 10years and off antiseizure medicines for at least the last 5years. "Resolved" is not necessarily identical to the conventional view of "remission or "cure." Different practical definitions may be formed and used for various specific purposes. This revised definition of epilepsy brings the term in concordance with common use. A PowerPoint slide summarizing this article is available for download in the Supporting Information section.

  • 3. Fisher, Robert S.
    et al.
    Acevedo, Carlos
    Arzimanoglou, Alexis
    Bogacz, Alicia
    Cross, J. Helen
    Elger, Christian E.
    Engel, Jerome, Jr.
    Forsgren, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för farmakologi och klinisk neurovetenskap, Klinisk neurovetenskap.
    French, Jacqueline A.
    Hesdorffer, Dale C.
    Lee, Byung-In
    Mathern, Gary W.
    Moshe, Solomon L.
    Perucca, Emilio
    Scheffer, Ingrid E.
    Tomson, Torbjorn
    Watanabe, Masako
    Wiebe, Samuel
    How long for epilepsy remission in the ILAE definition?2017Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 58, nr 8, s. 1486-1487Artikel i tidskrift (Refereegranskat)
  • 4.
    Ibinda, Fredrick
    et al.
    KEMRI Wellcome Trust Res Programme, Ctr Geog Med Res Coast, Kilifi, Kenya.
    Wagner, Ryan
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin. MRC/Wits Rural Public Health and Health Transitions Research Unit (Agincourt), Faculty of Health Sciences, School of Public Health, University of the Witwatersrand, Acornhoek, South Africa.
    Bertram, Melanie Y.
    WHO, CH-1211 Geneva, Switzerland.
    Ngugi, Anthony K.
    KEMRI Wellcome Trust Res Programme, Ctr Geog Med Res Coast, Kilifi, Kenya.
    Bauni, Evasius
    KEMRI Wellcome Trust Res Programme, Ctr Geog Med Res Coast, Kilifi, Kenya.
    Vos, Theo
    Univ Washington, Inst Hlth Metr & Evaluat, Seattle, USA.
    Sander, Josemir W.
    UCL Inst Neurol, NIHR Univ Coll London Hosp Biomed Res Ctr, Dept Clin & Expt Epilepsy, London, England.
    Newton, Charles R.
    KEMRI Wellcome Trust Res Programme, Ctr Geog Med Res Coast, Kilifi, Kenya.
    Burden of epilepsy in rural Kenya measured in disability-adjusted life years2014Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 55, nr 10, s. 1626-1633Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objectives

    The burden of epilepsy, in terms of both morbidity and mortality, is likely to vary depending on the etiology (primary [genetic/unknown] vs. secondary [structural/metabolic]) and with the use of antiepileptic drugs (AEDs). We estimated the disability-adjusted life years (DALYs) and modeled the remission rates of active convulsive epilepsy (ACE) using epidemiologic data collected over the last decade in rural Kilifi, Kenya.

    Methods

    We used measures of prevalence, incidence, and mortality to model the remission of epilepsy using disease-modeling software (DisMod II). DALYs were calculated as the sum of Years Lost to Disability (YLD) and Years of Life Lost (YLL) due to premature death using the prevalence approach, with disability weights (DWs) from the 2010 Global Burden of Disease (GBD) study. DALYs were calculated with R statistical software with the associated uncertainty intervals (UIs) computed by bootstrapping.

    Results

    A total of 1,005 (95% UI 797-1,213) DALYs were lost to ACE, which is 433 (95% UI 393-469) DALYs lost per 100,000 people. Twenty-six percent (113/100,000/year, 95% UI 106-117) of the DALYs were due to YLD and 74% (320/100,000/year, 95% UI 248-416) to YLL. Primary epilepsy accounted for fewer DALYs than secondary epilepsy (98 vs. 334 DALYs per 100,000 people). Those taking AEDs contributed fewer DALYs than those not taking AEDs (167 vs. 266 DALYs per 100,000 people). The proportion of people with ACE in remission per year was estimated at 11.0% in males and 12.0% in females, with highest rates in the 0-5year age group.

    Significance

    The DALYs for ACE are high in rural Kenya, but less than the estimates of 2010 GBD study. Three-fourths of DALYs resulted from secondary epilepsy. Use of AEDs was associated with 40% reduction of DALYs. Improving adherence to AEDs may reduce the burden of epilepsy in this area.

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  • 5. Kahlow, H.
    et al.
    Olivecrona, Magnus
    Umeå universitet, Medicinska fakulteten, Institutionen för farmakologi och klinisk neurovetenskap, Klinisk neurovetenskap.
    Surgical and hardware complications to vagal nerve stimulation for drug resistant epilepsy. A longitudinal single centre study of 143 patients2012Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 53, nr s5, s. 33-33Artikel i tidskrift (Övrigt vetenskapligt)
  • 6.
    Linehan, Christine
    et al.
    UCD Centre for Disability Studies, University College Dublin, Dublin, Ireland.
    Benson, Ailbhe
    UCD Centre for Disability Studies, University College Dublin, Dublin, Ireland.
    Gunko, Alex
    UCD Centre for Disability Studies, University College Dublin, Dublin, Ireland.
    Christensen, Jakob
    Department of Neurology, Aarhus University Hospital, Aarhus, Denmark.
    Sun, Yuelian
    Department of Neurology, Aarhus University Hospital, Aarhus, Denmark; Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; National Center for Register-Based Research, Department of Economics and Business Economics, Business, and Social Science, Aarhus University, Aarhus, Denmark.
    Tomson, Torbjorn
    Department of Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden.
    Marson, Anthony
    Institute of Translational Medicine, University of Liverpool, Liverpool, United Kingdom.
    Forsgren, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Neurovetenskaper.
    Trinka, Eugen
    Department of Neurology, Christian Doppler Clinic, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria; EpiCARE European Reference Network, Salzburg, Austria; Neuroscience Institute, Christian Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria; Department of Public Health, Health Services Research, and Health Technology Assessment, University for Health Sciences, Medical Informatics, and Technology, Hall in Tirol, Austria.
    Iliescu, Catrinel
    Clinical Neurosciences Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania; Pediatric Neurology Department, Expertise Center for Rare Diseases in Pediatric Neurology, Prof Dr Alexandru Obregia Clinical Hospital, Bucharest, Romania; EpiCARE European Reference Network, Bucharest, Romania.
    Althoehn Sonderup, Julie
    Department of Neurology, Aarhus University Hospital, Aarhus, Denmark.
    Werenberg Dreier, Julie
    National Center for Register-Based Research, Department of Economics and Business Economics, Business, and Social Science, Aarhus University, Aarhus, Denmark.
    Sandu, Carmen
    Clinical Neurosciences Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.
    Leanca, Madalina
    Clinical Neurosciences Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.
    Rainer, Lucas
    Department of Neurology, Christian Doppler Clinic, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria.
    Kobulashvili, Teia
    Department of Neurology, Christian Doppler Clinic, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria.
    Granbichler, Claudia A.
    Department of Neurology, Christian Doppler Clinic, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria; Department of Neurology, Chaim Sheba Medical Center, Ramat Gan, Israel; Sacker Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel.
    Delanty, Norman
    Beaumont Hospital, Dublin, Ireland; School of Pharmacy and Biomolecular Sciences, Royal College of Surgeons in Ireland, Ireland.
    Doherty, Colin
    FutureNeuro Research Centre for Rare and Chronic Diseases, Royal College of Surgeons in Ireland, Dublin, Ireland; Academic Unit of Neurology, Trinity College Dublin, Dublin, Ireland.
    Staines, Anthony
    School of Nursing, Psychotherapy, and Community Health, Dublin City University, Dublin, Ireland.
    Shahwan, Amre
    Temple Street Children's University Hospital, Dublin, Ireland.
    ESBACE Consortium and Collaborators,
    Exploring the prevalence and profile of epilepsy across Europe using a standard retrospective chart review: Challenges and opportunities2021Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 62, nr 11, s. 2651-2666Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objective: This study aimed to determine the prevalence of epilepsy in four European countries (Austria, Denmark, Ireland, and Romania) employing a standard methodology. The study was conducted under the auspices of ESBACE (European Study on the Burden and Care of Epilepsy).

    Methods: All hospitals and general practitioners serving a region of at least 50 000 persons in each country were asked to identify patients living in the region who had a diagnosis of epilepsy or experienced a single unprovoked seizure. Medical records were accessed, where available, to complete a standardized case report form. Data were sought on seizure frequency, seizure type, investigations, etiology, comorbidities, and use of antiseizure medication. Cases were validated in each country, and the degree of certainty was graded as definite, probable, or suspect cases.

    Results: From a total population of 237 757 in the four countries, 1988 (.8%) patients were identified as potential cases of epilepsy. Due to legal and ethical issues in the individual countries, medical records were available for only 1208 patients, and among these, 113 had insufficient clinical information. The remaining 1095 cases were classified as either definite (n = 706, 64.5%), probable (n = 191, 17.4%), suspect (n = 153, 14.0%), or not epilepsy (n = 45, 4.1%).

    Significance: Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in epidemiological research.

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  • 7. Ozanne, A.
    et al.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ekstedt, G.
    Malmgren, K.
    Patient experiences of epilepsy surgery - a longitudinal qualitative study2014Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 55, nr Supplement 2, s. 174-174Artikel i tidskrift (Övrigt vetenskapligt)
  • 8. Ozanne, Anneli
    et al.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Health Sciences, University West, Trollhättan, Sweden.
    Ekstedt, Gerd
    Malmgren, Kristina
    Patients' expectations and experiences of epilepsy surgery - A population-based long-term qualitative study2016Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 57, nr 4, s. 605-611Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Objective: The aim of this prospective and population-based longitudinal study was to explore patients' expectations before surgery and their experiences both short and long term after epilepsy surgery.

    Methods: A national sample of adult patients answered open-ended questions preoperatively, 2 years after surgery and at a cross-sectional long-term follow-up (mean 13 years, standard deviation [SD] 1.85). The answers were analyzed by qualitative content analysis.

    Results: Eighty patients participated in the study. Before surgery, patients experienced a belief in a "normal" life; they hoped for reduction of seizures and medication, a richer social life, and more self-confidence. However, they also experienced anxiety of the unknown. They were afraid of the operation, of continued seizures, and of complications. At both postoperative follow-ups patients experienced increased independence. They had symptom reduction, felt relief from worries and fears, and felt that they had a new life. However, some patients experienced that the operation had changed their life to the worse due to both psychological and neurologic adverse effects, regardless of whether they had obtained seizure freedom or improvement.

    Significance: Positive experiences of epilepsy surgery dominated, both in the short and long term. However, attention must be paid to negative expectations before and negative experiences after surgery in order to provide individual support and information. This should increase the possibility for patients to have realistic hopes before surgery and to find coping strategies in the new life situation after surgery.

  • 9. Pugliatti, Maura
    et al.
    Beghi, Ettore
    Forsgren, Lars
    Umeå universitet, Medicinsk fakultet, Farmakologi och klinisk neurovetenskap, Neurologi.
    Ekman, Mattias
    Sobocki, Patrik
    Estimating the cost of epilepsy in Europe: a review with economic modeling.2007Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 48, nr 12, s. 2224-2233Artikel i tidskrift (Övrigt vetenskapligt)
  • 10.
    Wagner, Ryan G
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin. University of the Witwatersrand, MRC/Wits Rural PublicHealth & Health Transitions Research Unit (Agincourt), Johannesburg, South Africa.
    Bertram, M
    Gomez-Olive, F X
    Tollman, S
    Lindholm, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin.
    Newton, C
    Hofman, K
    Health care utilization and out-of-pocket costs of people with epilepsy in rural South Africa: a cross-sectional survey2015Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 56, s. 141-141Artikel i tidskrift (Övrigt vetenskapligt)
  • 11.
    Wagner, Ryan G.
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa. Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Neurovetenskaper. Studies of Epidemiology of Epilepsy in Demographic Surveillance Systems (SEEDS) – INDEPTH Network, Accra, Ghana; MRC/Wits Rural Public Health & Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
    Norström, Fredrik
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Bertram, Melanie Y
    Tollman, Stephen M.
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa. Studies of Epidemiology of Epilepsy in Demographic Surveillance Systems (SEEDS) – INDEPTH Network, Accra, Ghana; MRC/Wits Rural Public Health & Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
    Forsgren, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Neurovetenskaper.
    Newton, Charles R.
    Lindholm, Lars
    Umeå universitet, Medicinska fakulteten, Institutionen för epidemiologi och global hälsa.
    Community health workers to improve adherence to anti-seizure medication in rural South Africa: Is it cost-effective?2021Ingår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 62, nr 1, s. 98-106Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE: Epilepsy is a common, chronic neurological disorder that disproportionately affects individuals living in low- and middle-income countries (LMICs), where the treatment gap remains high and adherence to medication remains low. Community health workers (CHWs) have been shown to be effective at improving adherence to chronic medications, yet no study assessing the costs of CHWs in epilepsy management has been reported.

    METHODS: Using a Markov model with age- and sex-varying transition probabilities, we determined whether deploying CHWs to improve epilepsy treatment adherence in rural South Africa would be cost-effective. Data were derived using published studies from rural South Africa. Official statistics and international disability weights provided cost and health state values, respectively, and health gains were measured using quality adjusted life years (QALYs).

    RESULTS: The intervention was estimated at International Dollars ($) 123 250 per annum per sub-district community and cost $1494 and $1857 per QALY gained for males and females, respectively. Assuming a costlier intervention and lower effectiveness, cost per QALY was still less than South Africa's Gross Domestic Product per capita of $13 215, the cost-effectiveness threshold applied.

    SIGNIFICANCE: CHWs would be cost-effective and the intervention dominated even when costs and effects of the intervention were unfavorably varied. Health system re-engineering currently underway in South Africa identifies CHWs as vital links in primary health care, thereby ensuring sustainability of the intervention. Further research on understanding local health state utility values and cost-effectiveness thresholds could further inform the current model, and undertaking the proposed intervention would provide better estimates of its efficacy on reducing the epilepsy treatment gap in rural South Africa.

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