Department of Human Neurosciences, Sapienza University, Rome and Past President of LICE, Italian League Against Epilepsy, Rome, Italy.
IRCCS NEUROMED, Pozzilli, IS, Italy.
Epilepsy Behav. 2022 Dec;137(Pt A):108950. doi: 10.1016/j.yebeh.2022.108950. Epub 2022 Nov 5.
This study aimed to evaluate the consensus level between a representative group of Italian neurologists and people with Drug-Resistant Epilepsy (DRE) regarding a series of statements about different aspects involved in the management of epilepsy to identify the unmet needs of the People with Epilepsy (PwE) and the future perspectives for the management of this disease. This observational study was conducted using a classic Delphi technique. A 19-statement questionnaire was administered anonymously through an online platform to a panel of expert clinicians and a panel of PwE, analyzing three main topics of interest: drug resistance, access to care, and PwE's experience. The consensus was achieved on 8 of the 19 statements administered to the panel of medical experts and on 4 of the 14 submitted to the panel of PwE, particularly on the definition of DRE and its consequences on treatment, Quality of Life (QoL), and autonomy of PwE. Most of the items, however, did not reach a consensus and highlighted the lack of a shared univocal view on some topics, such as accessibility to care throughout the country and the role of emerging tools such as telemedicine, narrative medicine, and digital devices. In many cases, the two panels expressed different views on the statements. The results outlined many fields of possible intervention, such as the need for educational initiatives targeted at physicians and PwE - for example, regarding telemedicine, digital devices, and narrative medicine - as well as the spread of better knowledge about epilepsy among the general population, in order to reduce epilepsy stigma. Institutions, moreover, could take a cue from this survey to develop facilities aimed at enhancing PwE's autonomy and promoting more equal access to care throughout the country.
本研究旨在评估一组具有代表性的意大利神经病学家与耐药性癫痫（DRE）患者之间对涉及癫痫管理的不同方面的一系列陈述的共识水平，以确定癫痫患者（PwE）的未满足需求和该疾病管理的未来展望。这项观察性研究采用经典德尔菲技术进行。通过在线平台匿名向专家临床医生小组和 PwE 小组提供了一份包含 19 个陈述的问卷，分析了三个主要关注领域：耐药性、获得治疗的机会以及 PwE 的体验。在向医学专家小组提出的 19 项陈述中有 8 项、向 PwE 小组提出的 14 项陈述中有 4 项达成了共识，特别是在 DRE 的定义及其对治疗、生活质量（QoL）和 PwE 自主性的影响方面。然而，大多数项目没有达成共识，突出了在某些主题上缺乏共识的看法，例如在全国范围内获得治疗的机会以及新兴工具（如远程医疗、叙事医学和数字设备）的作用。在许多情况下，两个小组对陈述的看法不同。结果列出了许多可能的干预领域，例如需要针对医生和 PwE 开展教育计划，例如有关远程医疗、数字设备和叙事医学的计划，以及在普通人群中普及有关癫痫的更多知识，以减少癫痫耻辱感。此外，机构可以从这项调查中得到启示，制定旨在增强 PwE 自主性并促进全国范围内更公平获得治疗的设施。
