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- Baumgartner, T., et al.
(författare)
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A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies
- 2021
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Ingår i: Epilepsia Open. - : Wiley. - 2470-9239. ; 6:1, s. 160-170
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Clinical care of rare and complex epilepsies is challenging, because evidence-based treatment guidelines are scarce, the experience of many physicians is limited, and interdisciplinary treatment of comorbidities is required. The pathomechanisms of rare epilepsies are, however, increasingly understood, which potentially fosters novel targeted therapies. The objectives of our survey were to obtain an overview of the clinical practice in European tertiary epilepsy centers treating patients with 5 arbitrarily selected rare epilepsies and to get an estimate of potentially available patients for future studies. Methods: Members of the European Reference Network for rare and complex epilepsies (EpiCARE) were invited to participate in a web-based survey on clinical practice of patients with Dravet syndrome, tuberous sclerosis complex (TSC), autoimmune encephalitis, and progressive myoclonic epilepsies including Unverricht Lundborg and Unverricht-like diseases. A consensus-based questionnaire was generated for each disease. Results: Twenty-six of 30 invited epilepsy centers participated. Cohorts were present in most responding centers for TSC (87%), Dravet syndrome (85%), and autoimmune encephalitis (71%). Patients with TSC and Dravet syndrome represented the largest cohorts in these centers. The antiseizure drug treatments were rather consistent across the centers especially with regard to Dravet syndrome, infantile spasms in TSC, and Unverricht Lundborg / Unverricht-like disease. Available, widely used targeted therapies included everolimus in TSC and immunosuppressive therapies in autoimmune encephalitis. Screening for comorbidities was routinely done, but specific treatment protocols were lacking in most centers. Significance: The survey summarizes the current clinical practice for selected rare epilepsies in tertiary European epilepsy centers and demonstrates consistency as well as heterogeneity in the treatment, underscoring the need for controlled trials and recommendations. The survey also provides estimates for potential participants of clinical trials recruited via EpiCARE, emphasizing the great potential of Reference Networks for future studies to evaluate new targeted therapies and to identify novel biomarkers. © 2020 The Authors. Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy
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| 2. |
- Ben-Menachem, Elinor, 1945, et al.
(författare)
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Long-term safety and tolerability of lacosamide monotherapy in patients with epilepsy: Results from a multicenter, open-label trial
- 2021
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Ingår i: Epilepsia Open. - : Wiley. - 2470-9239. ; 6:3
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Tidskriftsartikel (refereegranskat)abstract
- The primary objective of this trial (SP1042; NCT02582866) was to assess long-term safety and tolerability of lacosamide monotherapy (200-600 mg/day) in adults with focal (partial-onset) seizures or generalized tonic-clonic seizures (without clear focal origin). This Phase III, long-term, open-label, multicenter, follow-up trial enrolled patients with epilepsy who were taking lacosamide in, and completed, the previous double-blind trial (SP0994; NCT01465997). Primary safety outcomes were treatment-emergent adverse events (TEAEs), discontinuations due to TEAEs, and serious TEAEs. One hundred and six patients were enrolled and received lacosamide: 84 (79.2%) completed the trial and 22 (20.8%) discontinued. The median duration of exposure was 854.0 days, with a median modal dose of 200 mg/day. Ninety-six (90.6%), 64 (60.4%), and 44 (41.5%) patients had >= 12, >= 24, and >= 36 months of lacosamide exposure, respectively. At least one TEAE was reported by 61 (57.5%) patients. The most common (>= 4%) TEAEs were headache (10 [9.4%]), nasopharyngitis (eight [7.5%]), and back pain (five [4.7%]). One (0.9%) patient discontinued due to a TEAE (sudden unexpected death in epilepsy; not considered drug-related), 14 (13.2%) patients reported serious TEAEs, and seven (6.6%) patients reported TEAEs that were considered drug-related. Overall, long-term lacosamide monotherapy was generally well tolerated up to 600 mg/day, with no new safety signals identified.
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| 5. |
- Lisovska, K., et al.
(författare)
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An online tool for information to women with epilepsy and therapeutic drug monitoring in pregnancy: Design and pilot study
- 2021
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Ingår i: Epilepsia Open. - : Wiley. - 2470-9239. ; 6:2, s. 339-344
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Tidskriftsartikel (refereegranskat)abstract
- Objective Information to women with epilepsy on pregnancy-related antiseizure medication (ASM) issues and reliable tools for therapeutic drug monitoring (TDM) are important aspects of epilepsy care. We aimed to develop and test an online tool for patient education on pregnancy-related issues and communication with epilepsy nurses during pregnancy for women with epilepsy. Methods An existing national platform for online communication (1177.se) was used, and an online tool was developed by two epilepsy nurses, two neurologists, and an IT technician. The tool was launched as a complement to standard care, and patients deciding to use it were invited to participate in a survey of user experiences and knowledge questions. Results The online tool consists of two modules: one for patient education and one for TDM during pregnancy. The latter module allows scheduling of automatic reminders of blood tests that are sent to patients at set intervals. The epilepsy nurse can communicate results and suggested dose changes in the tool. A total of 48 women answered the survey: 28 had been invited to use the information module and 20 to use the TDM module. Patient experiences were generally good, and most users of the TDM module would prefer an online means of communication in future pregnancies. For epilepsy nurses, the tool provided good overview of patients currently pregnant and administrative advantages compared with traditional means of communication. Significance Online patient education and communication about TDM during pregnancy are feasible and can be a valuable part of future digitalization efforts in epilepsy care.
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| 6. |
- Zelano, Johan, 1981
(författare)
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Recurrence risk after a first remote symptomatic seizure in adults: Epilepsy or not?
- 2021
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Ingår i: Epilepsia Open. - : Wiley. - 2470-9239. ; 6:4, s. 634-644
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Tidskriftsartikel (refereegranskat)abstract
- The ILAE practical definition of epilepsy has a one seizure possibility to diagnose epilepsy after a first seizure if the recurrence risk is very high. The recurrence risk after a first seizure in brain disorders (first remote seizure) is often high, but varies with etiology, so more specific information is needed for clinical practice. This review describes etiology-specific recurrence risks in adults with a first remote seizure in stroke, traumatic brain injury, infections, dementia, multiple sclerosis, and tumors. Most studies are short, single center, and retrospective. Inclusion criteria, outcome ascertainment, and results vary. Few patient categories are clearly above the epilepsy threshold of recurrence risk, and there are surprisingly little data for important etiologies like brain infections. Beside stroke, severe TBI could have a sufficiently high recurrence risk for early epilepsy diagnosis, but more studies are needed, preferably prospective ones. The literature is uninformative regarding which seizures qualify as remote. The clinical implication of the low level of available evidence is that for other etiologies than stroke, seizure recurrence remains the most appropriate indicator of epilepsy for most patients with a first remote seizure. Nonetheless, there are worrying indications of a diagnostic drift, which puts patients with a preexisting brain disorder at risk of misdiagnosis. Although there are drawbacks to an intermediate term like "possible epilepsy," it could perhaps be useful in cases when the recurrence risk is high, but epilepsy criteria are not definitely met after a first remote seizure.
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