Governance of the clinical pathway and management of the patient suffering from epilepsy and drug-resistant epilepsy
DOI:
https://doi.org/10.33393/grhta.2022.2418Keywords:
Anti-seizure medicines, Drug-resistant epilepsy, Epilepsy, Epilepsy management, First seizure clinic, People with epilepsyAbstract
Epilepsy is a diffuse chronic neurological disease affecting around 50 million people worldwide. The diagnostic criteria by the International League against Epilepsy must be fulfilled to diagnose the disease, which is characterized by brief and transient episodes of abnormal neuronal activity involving one or both hemispheres, depending on the epilepsy type. The diagnosis of epilepsy should be properly and timely made because patients suffering from the disease are affected not only by seizure recurrence but also by epilepsy-related psychiatric and/or cognitive comorbidities that may have a huge impact with severe professional and social implications. It is of vital importance to define a specific governance model that has to be virtuously applied into the different phases of the clinical pathway of the patients with epilepsy in order to guarantee them the best model of care possible.
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Fisher RS, Acevedo C, Arzimanoglou A, et al. ILAE official report: a practical clinical definition of epilepsy. Epilepsia. 2014;55(4):475-482. https://doi.org/10.1111/epi.12550 PMID:24730690 DOI: https://doi.org/10.1111/epi.12550
Beghi E, Carpio A, Forsgren L, et al. Recommendation for a definition of acute symptomatic seizure. Epilepsia. 2010;51(4):671-675. https://doi.org/10.1111/j.1528-1167.2009.02285.x PMID:19732133 DOI: https://doi.org/10.1111/j.1528-1167.2009.02285.x
Fisher RS, Cross JH, French JA, et al. Operational classification of seizure types by the International League Against Epilepsy: Position Paper of the ILAE Commission for Classification and Terminology. Epilepsia. 2017;58(4):522-530. https://doi.org/10.1111/epi.13670 PMID:28276060 DOI: https://doi.org/10.1111/epi.13670
Scheffer IE, Berkovic S, Capovilla G, et al. ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia. 2017;58(4):512-521. https://doi.org/10.1111/epi.13709 PMID:28276062 DOI: https://doi.org/10.1111/epi.13709
Musante L, Costa P, Zanus C, et al. The genetic diagnosis of ultrarare DEEs: an ongoing challenge. Genes (Basel). 2022;13(3):500. https://doi.org/10.3390/genes13030500PMID:35328054 DOI: https://doi.org/10.3390/genes13030500
Syvertsen M, Nakken KO, Edland A, Hansen G, Hellum MK, Koht J. Prevalence and etiology of epilepsy in a Norwegian county – a population based study. Epilepsia. 2015;56(5):699-706. https://doi.org/10.1111/epi.12972 PMID:25810072 DOI: https://doi.org/10.1111/epi.12972
Stefanidou M, Beiser AS, Himali JJ, et al. Bi-directional association between epilepsy and dementia: The Framingham Heart Study. Neurology. 2020;95(24):e3241-e3247. https://doi.org/10.1212/WNL.0000000000011077 PMID:33097599 DOI: https://doi.org/10.1212/WNL.0000000000011077
Yu T, Liu X, Wu J, Wang Q. Electrophysiological biomarkers of epileptogenicity in Alzheimer’s disease. Front Hum Neurosci. 2021;15:747077. https://doi.org/10.3389/fnhum.2021.747077 PMID: 34916917 DOI: https://doi.org/10.3389/fnhum.2021.747077
Balestrini S, Arzimanoglou A, Blümcke I, et al. The aetiologies of epilepsy. Epileptic Disord. 2021;23(1):1-16. https://doi.org/10.1684/epd.2021.1255 PMID:33720020 DOI: https://doi.org/10.1684/epd.2021.1255
Dahl-Hansen E, Koht J, Syvertsen M. Epilepsy at different ages – etiologies in a Norwegian population. Epilepsia Open. 2018;4(1):176-181. https://doi.org/10.1002/epi4.12292PMID:30868128 DOI: https://doi.org/10.1002/epi4.12292
Löscher W, Potschka H, Sisodiya SM, Vezzani A. Drug resistance in epilepsy: clinical impact, potential mechanisms, and new innovative treatment options. Pharmacol Rev. 2020;72(3):606-638. https://doi.org/10.1124/pr.120.019539 PMID:32540959 DOI: https://doi.org/10.1124/pr.120.019539
Kwan P, Arzimanoglou A, Berg AT, et al. Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010;51(6):1069-1077. https://doi.org/10.1111/j.1528-1167.2009.02397.x PMID:19889013 DOI: https://doi.org/10.1111/j.1528-1167.2009.02397.x
Kwan P, Brodie MJ. Early identification of refractory epilepsy. N Engl J Med. 2000;342(5):314-319. https://doi.org/10.1056/NEJM200002033420503 PMID:10660394 DOI: https://doi.org/10.1056/NEJM200002033420503
Schuele SU, Lüders HO. Intractable epilepsy: management and therapeutic alternatives. Lancet Neurol. 2008;7(6):514-524. https://doi.org/10.1016/S1474-4422(08)70108-XPMID:18485315 DOI: https://doi.org/10.1016/S1474-4422(08)70108-X
Consales A, Casciato S, Asioli S, et al. The surgical treatment of epilepsy. Neurol Sci. 2021;42(6):2249-2260. https://doi.org/10.1007/s10072-021-05198-y PMID:33797619 DOI: https://doi.org/10.1007/s10072-021-05198-y
Mao H, Chen Y, Ge Q, Ye L, Cheng H. Short- and long-term response of vagus nerve stimulation therapy in drug-resistant epilepsy: a systematic review and meta-analysis. Neuromodulation. 2022;25(3):327-342. https://doi.org/10.1111/ner.13509 PMID:35396068 DOI: https://doi.org/10.1111/ner.13509
Dolsten M, Søgaard M. Precision medicine: an approach to R&D for delivering superior medicines to patients. Clin Transl Med. 2012;1(1):7. https://doi.org/10.1186/2001-1326-1-7PMID:23369459 DOI: https://doi.org/10.1186/2001-1326-1-7
Daci A, Bozalija A, Jashari F, Krasniqi S. Individualizing treatment approaches for epileptic patients with Glucose Transporter Type1 (GLUT-1) deficiency. Int J Mol Sci. 2018;19(1):122. https://doi.org/10.3390/ijms19010122 PMID:29303961 DOI: https://doi.org/10.3390/ijms19010122
van Karnebeek CD, Tiebout SA, Niermeijer J, et al. Pyridoxine-dependent epilepsy: an expanding clinical spectrum. Pediatr Neurol. 2016 Jun;59:6-12. https://doi.org/10.1016/j.pediatrneurol.2015.12.013 PMID: 26995068 DOI: https://doi.org/10.1016/j.pediatrneurol.2015.12.013
Kale R. Bringing epilepsy out of the shadows. BMJ. 1997;315(7099):2-3. https://doi.org/10.1136/bmj.315.7099.2 PMID:9233309 DOI: https://doi.org/10.1136/bmj.315.7099.2
Kwon CS, Jacoby A, Ali A, et al. Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy – report from the International League Against Epilepsy Task Force on Stigma in Epilepsy. Epilepsia. 2022;63(3):573-597. https://doi.org/10.1111/epi.17135 PMID:34985782 DOI: https://doi.org/10.1111/epi.17135
Beghi E, Cornaggia C; RESt-1 Group. Morbidity and accidents in patients with epilepsy: results of a European cohort study. Epilepsia. 2002;43(9):1076-1083. https://doi.org/10.1046/j.1528-1157.2002.18701.x PMID:12199734 DOI: https://doi.org/10.1046/j.1528-1157.2002.18701.x
Beghi E. Accidents and injuries in patients with epilepsy. Expert Rev Neurother. 2009 Feb;9(2):291-298. https://doi.org/10.1586/14737175.9.2.291 PMID: 19210202 DOI: https://doi.org/10.1586/14737175.9.2.291
Noe K. Counseling and management of the risks of living with epilepsy. Continuum (Minneap Minn). 2019;25(2):477-491. https://doi.org/10.1212/CON.0000000000000708PMID:30921019 DOI: https://doi.org/10.1212/CON.0000000000000708
Shorvon S, Perucca E, Engel J. The treatment of epilepsy. 4th ed. Oxford (UK):Wiley-Blackwell; 2015. DOI: https://doi.org/10.1002/9781118936979
Beghi E, Giussani G, Nichols E, et al; GBD 2016 Epilepsy Collaborators. Global, regional, and national burden of epilepsy, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(4):357-375. https://doi.org/10.1016/S1474-4422(18)30454-X PMID:30773428 DOI: https://doi.org/10.1016/S1474-4422(18)30454-X
Beghi E. Addressing the burden of epilepsy: many unmet needs. Pharmacol Res. 2016;107:79-84. https://doi.org/10.1016/j.phrs.2016.03.003 PMID:26952026 DOI: https://doi.org/10.1016/j.phrs.2016.03.003
Kanmounye US, Abu-Bonsrah N, Shlobin NA, Djoutsop OM. Letter: The World Health Organization's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-2031. Neurosurgery. 2022 Jun 1;90(6):e201-e203. https://doi.org/10.1227/neu.0000000000001976 PMID: 35383690 DOI: https://doi.org/10.1227/neu.0000000000001976
World Health Organization. Epilepsy: a public health imperative. 2019. Online https://www.who.int/publications/i/item/epilepsy-a-public-health-imperative
Fiest KM, Sauro KM, Wiebe S, et al. Prevalence and incidence of epilepsy: a systematic review and meta-analysis of international studies. Neurology. 2017 Jan 17;88(3):296-303. https://doi.org/10.1212/wnl.0000000000003509 PMID: 27986877 DOI: https://doi.org/10.1212/WNL.0000000000003509
Forsgren L, Beghi E, Oun A, Sillanpää M. The epidemiology of epilepsy in Europe – a systematic review. Eur J Neurol. 2005;12(4):245-253. https://doi.org/10.1111/j.1468-1331.2004.00992.x PMID:15804240 DOI: https://doi.org/10.1111/j.1468-1331.2004.00992.x
Stefan H. Epilepsy in the elderly: facts and challenges. Acta Neurol Scand. 2011;124(4):223-237. https://doi.org/10.1111/j.1600-0404.2010.01464.x PMID:21143593 DOI: https://doi.org/10.1111/j.1600-0404.2010.01464.x
Kanemoto K, LaFrance WC Jr, Duncan R, et al. PNES around the world: where we are now and how we can close the diagnosis and treatment gaps – an ILAE PNES Task Force report. Epilepsia Open. 2017;2(3):307-316. https://doi.org/10.1002/epi4.12060 PMID:29588959 DOI: https://doi.org/10.1002/epi4.12060
Ricci L, Boscarino M, Assenza G, et al; Epilepsy Study Group of the Italian Neurological Society. Clinical utility of home videos for diagnosing epileptic seizures: a systematic review and practical recommendations for optimal and safe recording. Neurol Sci. 2021;42(4):1301-1309. https://doi.org/10.1007/s10072-021-05040-5 PMID:33471259 DOI: https://doi.org/10.1007/s10072-021-05040-5
Larivière S, Federico P, Chinvarun Y, et al. ILAE Neuroimaging Task Force Highlight: harnessing optimized imaging protocols for drug-resistant childhood epilepsy. Epileptic Disord. 2021;23(5):675-681. https://doi.org/10.1684/epd.2021.1312 PMID:34526291 DOI: https://doi.org/10.1684/epd.2021.1312
Oliveira MC, Lima EM, de Paiva MLN, Valente KDR. Factors associated with caregiver burden of adults with epilepsy in a middle-income country. Seizure. 2022;98:1-7. https://doi.org/10.1016/j.seizure.2022.03.015 PMID:35381499 DOI: https://doi.org/10.1016/j.seizure.2022.03.015
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Accepted 2022-05-30
Published 2022-06-28
