Italian report on RARE epilepsies (i-RARE): A consensus on multidisciplinarity.
DEEs
Delphi
management
multidisciplinarity
rare epilepsies
Journal
Epilepsia open
ISSN: 2470-9239
Titre abrégé: Epilepsia Open
Pays: United States
ID NLM: 101692036
Informations de publication
Date de publication:
23 Aug 2024
23 Aug 2024
Historique:
revised:
07
07
2024
received:
12
05
2024
accepted:
24
07
2024
medline:
23
8
2024
pubmed:
23
8
2024
entrez:
23
8
2024
Statut:
aheadofprint
Résumé
Rare and complex epilepsies encompass a diverse range of disorders characterized by seizures. We aimed to establish a consensus on key issues related to these conditions through collaboration among experienced neurologists, neuropediatricians, and patient advocacy representatives. Employing a modified Delphi method, a scientific board comprising 20 physicians and 4 patient advocacy representatives synthesized existing literature with their expertise to formulate statements on contentious topics. A final 32-member expert panel, representing diverse regions of Italy, validated these statements through a two-round voting process, with consensus defined as an average score ≥7. Sixteen statements reached a consensus, emphasizing the necessity for epidemiological studies to ascertain the true prevalence of rare epilepsies. Etiology emerged as a crucial factor influencing therapeutic strategies and outcome prediction, with particular concern regarding prolonged and tonic-clonic seizures. The importance of early implementation of specific drugs and non-pharmacological interventions in the treatment algorithm for developmental and epileptic encephalopathies (DEEs) was underscored. Multidisciplinary care involving experts with diverse skills was deemed essential, emphasizing non-seizure outcomes in adolescence and adulthood. This national consensus underscores the imperative for personalized, comprehensive, and multidisciplinary management of rare epilepsies/DEEs. It advocates for increased research, particularly in epidemiology and therapeutic approaches, to inform clinical decision-making and healthcare policies, ultimately enhancing patients' outcomes. The modified Delphi method is broadly used to evaluate debated topics. In this work, we sought the consensus on integrated and social care in epilepsy management. Both representatives of high-level epilepsy centers and patients' caregivers were directly involved.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Investigateurs
Bartolini Emanuele
(B)
Bonanni Paolo
(B)
Boni Antonella
(B)
Briatore Eleonora
(B)
Canafoglia Laura
(C)
Del Negro Ilaria
(DN)
Fortunato Francesco
(F)
Galli Rosita
(G)
Giordano Lucio
(G)
Giugno Alessia
(G)
Giuliano Loretta
(G)
Lavra Loredana
(L)
Luchetti Anna
(L)
Maretti Michela
(M)
Marino Simona Domenica
(MS)
Mastrangelo Mario
(M)
Messana Tullio
(M)
Parente Eliana
(P)
Pellino Giuditta
(P)
Peruzzi Cinzia
(P)
Piccioli Marta
(P)
Pietrafusa Nicola
(P)
Pironi Virginia
(P)
Prezioso Giovanni
(P)
Prisco Giulia
(P)
Pulitano Patrizia
(P)
Ragona Francesca
(R)
Rizzi Romana
(R)
Rosati Eleonora
(R)
Ruta Maria Rosita
(RM)
Sarajlija Jasenka
(S)
Spagnoli Carlotta
(S)
Spalice Alberto
(S)
Terrone Gaetano
(T)
Trabacca Antonio
(T)
Valerio Massimo
(V)
Zucca Claudio
(Z)
Informations de copyright
© 2024 The Author(s). Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.
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