OBJECTIVE 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. METHODS 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. RESULTS 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. SIGNIFICANCE 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.

中文翻译：

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临床实践中的癫痫管理：疾病发生的时间和严重程度会影响患者和护理医生的优先事项吗？来自 EPINEEDS 研究的数据

目的 本研究的目的是根据癫痫发作的时间和严重程度评估癫痫患者及其护理医生的优先级。方法 这是一项全国性调查，对 21 家意大利癫痫中心的癫痫患者进行随访，他们的护理医师被要求填写匿名问卷，以收集有关该疾病不同方面及其管理需求和优先事项的数据。收集的信息包括人口统计学、临床特征和癫痫的诊断、治疗和结果。这些问题旨在了解患者及其护理医生的期望，并验证患者与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 年没有癫痫发作；(3) 至少 1 年无癫痫发作或偶有癫痫发作；(4)非耐药性反复发作；(5)耐药性癫痫发作；(6)手术候选人。结果 在纳入的 787 名患者中，432 名女性和 355 名男性，年龄在 15 至 88 岁（中位数为 41 岁）。病程从6个月到75年不等。样本包括 53 名新诊断癫痫患者，283 名至少 2 年没有癫痫发作，162 名至少 1 年无癫痫发作或偶尔癫痫发作，123 名非耐药性复发性癫痫患者，128 名耐药性癫痫发作和 38手术候选人。就疾病管理而言，患者和医生在优先事项和需求方面存在显着差异。虽然医生倾向于根据时间和严重程度优先考虑有关癫痫诊断和治疗的信息，但患者专注于寻找原因、药物的副作用以及任何新治疗对控制癫痫发作的影响，而不管预后类别。此外，医生往往会低估特定信息的交流，例如癫痫猝死 (SUDEP) 或非专业协会的存在，这些信息可能对特定类别的患者特别感兴趣。意义 癫痫患者与其护理医生在需求和优先事项方面的差异以及次优沟通要求实施旨在解决患者和护理人员认为与疾病管理最相关的因素的计划。