Laboratorio di Malattie Neurologiche, Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Milan, Italy.
Università "La Sapienza", Dipartimento di Neurologia e Psichiatria Policlinico Umberto I°, UOC Neurofisiopatologia e Malattie Muscolari, Italy.
Epilepsy Behav. 2021 Jan;114(Pt A):107201. doi: 10.1016/j.yebeh.2020.107201. Epub 2020 Jul 29.
The objective of this study was to assess the priorities of patients with epilepsy and their caring physicians with reference to the timing and severity of the disease.
This is a national survey in which patients with epilepsy followed in 21 Italian epilepsy centers, and their caring physicians were asked to fill anonymous questionnaires to collect data on different aspects of the disease and their needs and priorities in its management. The collected information included demographics, clinical profile and diagnosis, treatment and outcome of epilepsy. The questions were designed to understand the expectations of the patients and their caring physicians and verify the degree of concordance between patient and doctor. The study population was divided in six prognostic categories: (1) Newly diagnosed epilepsy; (2) Absence of seizures for at least 2 years; (3) Absence of seizures for at least 1 year or occasional seizures; (4) Nondrug-resistant recurrent seizures; (5) drug-resistant seizures; (6) surgical candidate.
Of the 787 patients enrolled, 432 were women and 355 men aged 15 to 88 years (median 41 years). Disease duration ranged from 6 months to 75 years. The sample included 53 patients with newly diagnosed epilepsy, 283 without seizures for at least 2 years, 162 seizure-free for at least 1 year or with occasional seizures, 123 with nondrug-resistant recurrent seizures, 128 with drug-resistant seizures, and 38 surgical candidates. Significant differences were found between patients and physicians in terms of priorities and needs with reference to the management of the disease. While physicians tend to prioritize the information on the diagnosis and treatment of epilepsy depending on timing and severity, patients focus on the search of the cause, the side effects of drugs, and the effects of any new treatment on the control of seizures regardless of the prognostic category. In addition, physicians tend to undervalue the communication of specific information, like the risk of sudden unexpected death in epilepsy (SUDEP) or the existence of lay associations, which might be of special interest for selected categories of patients.
Differences between patients with epilepsy and their caring physicians in terms of needs and priorities and suboptimal communication call for the implementation of programs aimed at addressing the factors deemed most relevant by patients and caregivers for the management of the disease.
本研究旨在评估癫痫患者及其照护医生对疾病的时间和严重程度的重视程度。
这是一项全国性调查，研究中纳入了在意大利 21 家癫痫中心就诊的癫痫患者及其照护医生，要求他们填写匿名问卷，以收集有关疾病的不同方面、管理需求和重点的信息。收集的信息包括人口统计学、临床特征和诊断、治疗和癫痫结局。问题旨在了解患者及其照护医生的期望，并验证患者和医生之间的一致性程度。研究人群分为六个预后类别：（1）新诊断的癫痫；（2）至少 2 年无癫痫发作；（3）至少 1 年无癫痫发作或偶有癫痫发作；（4）非耐药性复发性癫痫发作；（5）耐药性癫痫发作；（6）手术候选者。
在纳入的 787 名患者中，432 名女性，355 名男性，年龄 15-88 岁（中位数 41 岁）。疾病持续时间从 6 个月到 75 年不等。样本包括 53 名新诊断的癫痫患者、283 名至少 2 年无癫痫发作的患者、162 名至少 1 年无癫痫发作或偶有癫痫发作的患者、123 名非耐药性复发性癫痫发作患者、128 名耐药性癫痫发作患者和 38 名手术候选者。在疾病管理方面，患者和医生的重点和需求存在显著差异。尽管医生倾向于根据时间和严重程度优先考虑癫痫的诊断和治疗信息，但患者更关注病因的寻找、药物的副作用以及任何新治疗对控制癫痫发作的影响，而不论预后类别如何。此外，医生往往低估了特定信息的沟通，例如癫痫猝死风险（SUDEP）或存在非专业协会，这可能对某些类别的患者特别感兴趣。
癫痫患者及其照护医生在需求和重点方面存在差异，沟通不理想，因此需要实施旨在解决患者和照护者认为与疾病管理最相关的因素的项目。
