Objective: 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. Methods: 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. Results: 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. Significance: 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. Plain Language Summary: 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.
Italian report on RARE epilepsies (i-RARE): A consensus on multidisciplinarity / Riva A.; Coppola A.; Bisulli F.; Verrotti A.; Bagnasco I.; Elia M.; Darra F.; Lattanzi S.; Meletti S.; LaNeve A.; DiGennaro G.; Brambilla I.; Santoro K.; Prisco T.; Macari F.; Gambardella A.; di Bonaventura C.; Balestrini S.; Marini C.; Pruna D.; Capovilla G.; Specchio N.; Gobbi G.; Striano P.; Emanuele B.; Paolo B.; Antonella B.; Eleonora B.; Laura C.; Ilaria D.N.; Francesco F.; Rosita G.; Lucio G.; Alessia G.; Loretta G.; Loredana L.; Anna L.; Michela M.; Domenica M.S.; Mario M.; Tullio M.; Eliana P.; Giuditta P.; Cinzia P.; Marta P.; Nicola P.; Virginia P.; Giovanni P.; Giulia P.; Patrizia P.; Francesca R.; Romana R.; Eleonora R.; Rosita R.M.; Jasenka S.; Carlotta S.; Alberto S.; Gaetano T.; Antonio T.; Massimo V.; Claudio Z.. - In: EPILEPSIA OPEN. - ISSN 2470-9239. - ELETTRONICO. - (2024), pp. 0-0. [10.1002/epi4.13020]
Italian report on RARE epilepsies (i-RARE): A consensus on multidisciplinarity
Balestrini S.;
2024
Abstract
Objective: 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. Methods: 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. Results: 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. Significance: 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. Plain Language Summary: 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.
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