Models of care and relevance of territorial management in assisting persons with epilepsy

Authors

  • Oriano Mecarelli Department of Human Neurosciences, Sapienza University of Rome, Rome - Italy (retired); Past President, Italian League Against Epilepsy (LICE), Rome - Italy

DOI:

https://doi.org/10.33393/grhta.2023.2889

Keywords:

Antiseizure medications (ASMs), Epilepsy, Epilepsy management, Persons with epilepsy (PwEs)

Abstract

Epilepsy is a widespread social disease that affects people of all ages and often involves both diagnostic and therapeutic difficulties. Beyond seizure control, it is necessary to ensure people with epilepsy a good quality of life and respect for human rights, seeking to increase self-management capacity and break down stigma.

People with epilepsy should have privileged access to specialized epilepsy centers, where multidisciplinary care is possible. These centers, organized by different levels of complexity, should be uniformly distributed throughout the country and networked together.

The scientific community and health care organizations must therefore design all necessary strategies so that knowledge about epilepsy improves among the general population and the most effective pathways of care are effectively implemented.

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References

References

Beghi E. The epidemiology of epilepsy. Neuroepidemiology. 2020;54(2):185-191. https://doi.org/10.1159/000503831 PMID:31852003 DOI: https://doi.org/10.1159/000503831

Beghi E, Giussani G, Costa C, et al; ILAE Task Force on Epilepsy in the Elderly (2017-2021). The epidemiology of epilepsy in older adults: a narrative review by the ILAE Task Force on Epilepsy in the Elderly. Epilepsia. 2023;64(3):586-601. https://doi.org/10.1111/epi.17494 PMID:36625133 DOI: https://doi.org/10.1111/epi.17494

Giussani G, Cricelli C, Mazzoleni F, et al. Prevalence and incidence of epilepsy in Italy based on a nationwide database. Neuroepidemiology. 2014;43(3-4):228-232. https://doi.org/10.1159/000368801 PMID:25412652 DOI: https://doi.org/10.1159/000368801

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

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

Oto MM. The misdiagnosis of epilepsy: appraising risks and managing uncertainty. Seizure. 2017;44:143-146. https://doi.org/10.1016/j.seizure.2016.11.029 PMID:28017581 DOI: https://doi.org/10.1016/j.seizure.2016.11.029

Leibetseder A, Eisermann M, LaFrance WC Jr, Nobili L, von Oertzen TJ. How to distinguish seizures from non-epileptic manifestations. Epileptic Disord. 2020;22(6):716-738. https://doi.org/10.1684/epd.2020.1234 PMID:33399092 DOI: https://doi.org/10.1684/epd.2020.1234

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

Ottman R, Lipton RB, Ettinger AB, et al. Comorbidities of epilepsy: results from the Epilepsy Comorbidities and Health (EPIC) survey. Epilepsia. 2011;52(2):308-315. https://doi.org/10.1111/j.1528-1167.2010.02927.x PMID:21269285 DOI: https://doi.org/10.1111/j.1528-1167.2010.02927.x

Steiger BK, Jokeit H. Why epilepsy challenges social life. Seizure. 2017;44:194-198. https://doi.org/10.1016/j.seizure.2016.09.008 PMID:27756511 DOI: https://doi.org/10.1016/j.seizure.2016.09.008

Kanner AM, Saporta AS, Kim DH, et al; Human Epilepsy Project. Mood and anxiety disorders and suicidality in patients with newly diagnosed focal epilepsy. An analysis of a complex comorbidity. Neurology. 2023;100(11):e1123-e1134. https://doi.org/10.1212/WNL.0000000000201671 PMID:36539302 DOI: https://doi.org/10.1212/WNL.0000000000206839

Luoni C, Canevini MP, Capovilla G, et al. A prospective study of direct medical costs in a large cohort of consecutively enrolled patients with refractory epilepsy in Italy. Epilepsia. 2015;56(7):1162-1173. https://doi.org/10.1111/epi.13030 PMID:26046371 DOI: https://doi.org/10.1111/epi.13030

Begley C, Wagner RG, Abraham A, et al. The global cost of epilepsy: a systematic review and extrapolation. Epilepsia. 2022;63(4):892-903. https://doi.org/10.1111/epi.17165 PMID:35195894 DOI: https://doi.org/10.1111/epi.17165

Perrone V, Veronesi C, Dovizio M, et al. Analysis of patients with focal epilepsy and drug-resistant epilepsy in Italy: evaluation of their characteristics, therapeutic pathway and consumption of healthcare resources. Clinicoecon Outcomes Res. 2022;14:513-521. https://doi.org/10.2147/CEOR.S361692 PMID:35923519 DOI: https://doi.org/10.2147/CEOR.S361692

Mecarelli O, Capovilla G, Romeo A, Rubboli G, Tinuper P, Beghi E. Past and present public knowledge and attitudes toward epilepsy in Italy. Epilepsy Behav. 2010;18(1-2):110-115. https://doi.org/10.1016/j.yebeh.2010.03.004 PMID:20478746 DOI: https://doi.org/10.1016/j.yebeh.2010.03.004

Mecarelli O, Capovilla G, Romeo A, Rubboli G, Tinuper P, Beghi E. Knowledge and attitudes toward epilepsy among primary and secondary schoolteachers in Italy. Epilepsy Behav. 2011;22(2):285-292. https://doi.org/10.1016/j.yebeh.2011.06.019 PMID:21795121 DOI: https://doi.org/10.1016/j.yebeh.2011.06.019

Braga P, Hosny H, Kakooza-Mwesige A, Rider F, Tripathi M, Guekht A. How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma. Epileptic Disord. 2020;22(5):531-547. https://doi.org/10.1684/epd.2020.1201 PMID:33079064 DOI: https://doi.org/10.1684/epd.2020.1201

Kwon C-S, 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

Clifford LM, Brothers SL, Lang A. Self-disclosure patterns among children and youth with epilepsy: impact of perceived-stigma. Adolesc Health Med Ther. 2023;14:27-43. https://doi.org/10.2147/AHMT.S336124 PMID:36776152 DOI: https://doi.org/10.2147/AHMT.S336124

International League Against Epilepsy (ILAE). Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP). https://www.ilae.org/about-ilae/how-the-ilae-works/policy-and-advocacy/international-epilepsy-policy/draft-intersectoral-global-action-plan-on-epilepsy-and-other-neurological-disorders. Accessed December 2023.

WHO. Global Report. Intersectoral global action plan on epilepsy and other neurological disorders. 2023. https://www.who.int/publications/i/item/9789240076624. Accessed December 2023.

Grisold W, Freedman M, Gouider R, et al; Trustees of the World Federation of Neurology. The Intersectoral Global Action Plan (IGAP): a unique opportunity for neurology across the globe. J Neurol Sci. 2023;449:120645. https://doi.org/10.1016/j.jns.2023.120645 PMID:37062176 DOI: https://doi.org/10.1016/j.jns.2023.120645

Labiner DM, Bagic AI, Herman ST, Fountain NB, Walczak TS, Gumnit RJ; National Association of Epilepsy Centers. Essential services, personnel, and facilities in specialized epilepsy centers – revised 2010 guidelines. Epilepsia. 2010;51(11):2322-2333. https://doi.org/10.1111/j.1528-1167.2010.02648.x PMID:20561026 DOI: https://doi.org/10.1111/j.1528-1167.2010.02648.x

National Association of Epilepsy Centers (NAEC). What is an epilepsy center? https://www.naec-epilepsy.org/about-epilepsy-centers/what-is-an-epilepsy-center/. Accessed December 2023.

National Institute for Health and Care Excellence (NICE). NICE guideline [NG217]. 2022. Epilepsies in children, young people and adults. https://www.nice.org.uk/guidance/ng217. Accessed December 2023.

Health Improvement Scotland. SIGN 143. 2018. Diagnosis and management of epilepsy in adults. https://www.sign.ac.uk/media/1079/sign143_2018.pdf. Accessed December 2023.

Taylor C, Tudur-Smith C, Dixon P, et al; ESBACE consortium and EuroNASH collaborators. Care in Europe after presenting to the emergency department with a seizure; position paper and insights from the European Audit of Seizure Management in Hospitals. Eur J Neurol. 2022;29(7):1873-1884. https://doi.org/10.1111/ene.15336 PMID:35340074 DOI: https://doi.org/10.1111/ene.15336

Regione Emilia-Romagna – Aggiornamento Percorso Epilessia Linee di indirizzo per le Aziende Sanitarie dell’Emilia-Romagna per l’Organizzazione dell’Assistenza Integrata alla Persona con Epilessia. https://www.lice.it/pdf/EmiliaRomagna_DGR_1414-29.8.2022.pdf. Accessed December 2023.

Regione Lombardia – Percorsi diagnostico-terapeutici ed assistenziali dell’epilessia in Lombardia. https://www.lice.it/pdf/DGR_3677_13_ottobre_2020.pdf. Accessed December 2023.

Regione Veneto – Percorso diagnostico terapeutico assistenziale(PDTA) delle persone affette da epilessia. https://www.lice.it/pdf/2021.04.26_Decreto_11_Approvazione_PDTA_Epilessia.pdf. Accessed December 2023.

Regione Toscana – Percorso assistenziale per la presa in carico delle persone con epilessia. https://www.lice.it/pdf/PDTA_Regione_Toscana_Documento_Epilessie_03.05.19.pdf. Accessed December 2023.

Singh G, Braga P, Carrizosa J, et al. An epilepsy curriculum for primary health care providers: a report from the Education Council of the International League Against Epilepsy. Epileptic Disord. 2022;24(6):983-993. https://doi.org/10.1684/epd.2022.1479 PMID:35993831 DOI: https://doi.org/10.1684/epd.2022.1479

Çelik Ö, Apaydın Kaya Ç. Challenges and needs of epilepsy management in primary care (from the perspective of family physicians/general practitioners): a cross-sectional study. Epileptic Disord. 2023;25(5):739-748. https://doi.org/10.1002/epd2.20145 PMID:37584561 DOI: https://doi.org/10.1002/epd2.20145

Blümcke I, Biesel E, Bedenlier S, et al. A structured, blended learning program towards proficiency in epileptology: the launch of the ILAE Academy Level 2 Program. Epileptic Disord. 2022;24(5):737-750. https://doi.org/10.1684/epd.2022.1462 PMID:35801962 DOI: https://doi.org/10.1684/epd.2022.1462

Nascimento FA, Gao H, Katyal R, et al. Education research: competency-based EEG education. Neurology Education. 2023;2(4):e200094. https://ne.neurology.org/content/2/4/e200094 (Accessed December 2023) DOI: https://doi.org/10.1212/NE9.0000000000200094

Nascimento FA, Gavvala JR, Tankisi H, Beniczky S. Neurology resident EEG training in Europe. Clin Neurophysiol Pract. 2022;7:252-259. https://doi.org/10.1016/j.cnp.2022.08.001 PMID:36133398 DOI: https://doi.org/10.1016/j.cnp.2022.08.001

Amin U, Nascimento FA, Karakis I, Schomer D, Benbadis SR. Normal variants and artifacts: importance in EEG interpretation. Epileptic Disord. 2023;25(5):591-648. https://doi.org/10.1002/epd2.20040 PMID:36938895 DOI: https://doi.org/10.1002/epd2.20040

Greenblatt AS, Beniczky S, Nascimento FA. Pitfalls in scalp EEG: current obstacles and future directions. Epilepsy Behav. 2023;149:109500. https://doi.org/10.1016/j.yebeh.2023.109500 PMID:37931388 DOI: https://doi.org/10.1016/j.yebeh.2023.109500

Licchetta L, Trivisano M, Baldin E, et al. TELEmedicine for EPIlepsy Care (TELE-EPIC): protocol of a randomised, open controlled non-inferiority clinical trial. BMJ Open. 2021;11(12):e053980. https://doi.org/10.1136/bmjopen-2021-053980 PMID:34862297 DOI: https://doi.org/10.1136/bmjopen-2021-053980

Stipa G, Gabbrielli F, Rabbito C, et al. Telemedicine Working Group. The Italian technical/administrative recommendations for telemedicine in clinical neurophysiology. Neurol Sci. 2021 May;42(5):1923-1931. https://doi.org/10.1007/s10072-020-04732-8 PMID:32974797 DOI: https://doi.org/10.1007/s10072-020-04732-8

Madill ES, Gururangan K, Krishnamohan P. Improved access to rapid electroencephalography at a community hospital reduces inter-hospital transfers for suspected non-convulsive seizures. Epileptic Disord. 2022;24(3):507-516. https://doi.org/10.1684/epd.2021.1410 PMID:35770749 DOI: https://doi.org/10.1684/epd.2021.1410

https://www.iss.it/-/rapporto-istisan-23/1-documento-di-consensus-nazionale-sulla-telemedicina-per-la-neurofisiologia-clinica.

Mecarelli O, Di Gennaro G, Vigevano F. Unmet needs and perspectives in management of drug resistant focal epilepsy: an Italian study. Epilepsy Behav. 2022;137(Pt A):108950. https://doi.org/10.1016/j.yebeh.2022.108950 PMID:36347069 DOI: https://doi.org/10.1016/j.yebeh.2022.108950

Published

2024-07-22

How to Cite

Mecarelli, O. (2024). Models of care and relevance of territorial management in assisting persons with epilepsy. Global and Regional Health Technology Assessment, 11(Suppl. 1), 2–7. https://doi.org/10.33393/grhta.2023.2889
Received 2023-12-11
Accepted 2023-12-27
Published 2024-07-22

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