背景:癫痫,一种全球流行的神经系统疾病,在管理方面提出了不同的挑战,特别是对于局灶性发作类型。本研究旨在解决当前局灶性癫痫管理中的挑战和观点。专注于意大利的现实。
方法:使用德尔菲方法,本研究收集并分析了意大利癫痫专家小组在局灶性癫痫治疗关键方面的共识水平.重点领域包括患者流量,治疗途径,控制与不控制的癫痫,后续协议,以及患者报告结果(PRO)的相关性。这种方法可以全面评估临床意见和实践中的共识和分歧。
结果:该研究在26项声明中的23项达成了共识,有三项未能达成共识。大家对及时干预的重要性达成了强烈共识,个性化治疗计划,癫痫中心定期随访,以及PRO在临床实践中的作用。在未控制的局灶性癫痫的情况下,在之前的两种疗法均失败后,人们明显倾向于寻求替代治疗方案。关于将癫痫手术纳入不受控制的癫痫治疗以及在随访中进行脑电图评估的常规必要性,存在分歧。其他关键发现包括对缺乏儿科特异性研究限制了该患者人群的当前治疗选择的担忧。对儿童护理向成人护理过渡的关注不够,需要改善沟通。结果强调了治疗癫痫的复杂性,在患者护理方面达成广泛共识,但在具体治疗和管理方法上存在显著差异。
结论:该研究为控制局灶性发作性癫痫的当前状态和复杂性提供了有价值的见解。它强调了意大利现实中局灶性发作癫痫治疗途径的许多缺陷,虽然它也强调了以患者为中心的护理的重要性,早期和适当干预的必要性,和个性化的治疗方法。研究结果还要求继续研究,政策制定,和医疗保健系统的改进,以加强癫痫管理,强调了在这个不断发展的领域中对量身定制的医疗保健解决方案的持续需求。
BACKGROUND: Epilepsy, a globally prevalent neurological condition, presents distinct challenges in management, particularly for focal-onset types. This study aimed at addressing the current challenges and perspectives in focal epilepsy management, with focus on the Italian reality.
METHODS: Using the Delphi methodology, this research collected and analyzed the level of consensus of a panel of Italian epilepsy experts on key aspects of focal epilepsy care. Areas of focus included patient flow, treatment pathways, controlled versus uncontrolled epilepsy, follow-up protocols, and the relevance of patient-reported outcomes (PROs). This method allowed for a comprehensive assessment of consensus and divergences in clinical opinions and practices.
RESULTS: The study achieved consensus on 23 out of 26 statements, with three items failing to reach a consensus. There was strong agreement on the importance of timely intervention, individualized treatment plans, regular follow-ups at Epilepsy Centers, and the role of PROs in clinical practice. In cases of uncontrolled focal epilepsy, there was a clear inclination to pursue alternative treatment options following the failure of two previous therapies. Divergent views were evident on the inclusion of epilepsy surgery in treatment for uncontrolled epilepsy and the routine necessity of EEG evaluations in follow-ups. Other key findings included concerns about the lack of pediatric-specific research limiting current therapeutic options in this patient population, insufficient attention to the transition from pediatric to adult care, and need for improved communication. The results highlighted the complexities in managing epilepsy, with broad consensus on patient care aspects, yet notable divergences in specific treatment and management approaches.
CONCLUSIONS: The study offered valuable insights into the current state and complexities of managing focal-onset epilepsy. It highlighted many deficiencies in the therapeutic pathway of focal-onset epilepsy in the Italian reality, while it also underscored the importance of patient-centric care, the necessity of early and appropriate intervention, and individualized treatment approaches. The findings also called for continued research, policy development, and healthcare system improvements to enhance epilepsy management, highlighting the ongoing need for tailored healthcare solutions in this evolving field.