Institute of Psychological Medicine and Clinical Neuroscience, Cardiff University, United Kingdom.
Psychiatry of Intellectual Disability, Abertawe Bro Morgannwg University Health Board, United Kingdom.
Seizure. 2018 Mar;56:41-46. doi: 10.1016/j.seizure.2018.01.026. Epub 2018 Feb 8.
This article reflects the report by the British Branch of the International League Against Epilepsy (ILAE) Working Group on services for adults with epilepsy and intellectual disability (ID). Its terms of reference was to explore the current status of aspects of the care of people with an ID and epilepsy.
Survey content was developed from key themes identified by consensus of the working group. An electronic survey was distributed via email. The sample population was the membership of the ILAE UK, Royal College of Psychiatrists (RCPsych) Faculty of ID, Epilepsy Nurses Association (ESNA), and the Association of British Neurologists (ABN). Following a six week response period the data was then collated, anonymised and distributed to the working group in order that opinion statements could be gathered.
The time taken for individuals with both new-onset and established epilepsy to undergo routine investigation was commonly at least 1-3 months, far beyond recommendations made by NICE (CG20). A small minority of clinicians would not consider non-pharmacological interventions including epilepsy surgery, vagus nerve stimulation, and ketogenic diet for this population. Almost universally responders are actively involved in the assessment and management of key risk areas including risk of drowning, hospitalization, medication side effects, and sudden unexpected death in epilepsy (SUDEP).
This investigation identifies key themes and recommendations relating to care delivery and meeting the complex needs of people with ID and epilepsy. Adults with ID and epilepsy appear to exist in a unique, but inadequate, segment of epilepsy care delivery.
本文反映了英国国际癫痫联盟（ILAE）分会工作组关于成人癫痫和智力障碍（ID）服务的报告。其职权范围是探讨 ID 人群癫痫护理的现状。
调查内容是通过工作组的共识从关键主题中确定的。通过电子邮件分发电子调查。样本人群是 ILAE UK、皇家精神病学院（RCPsych）ID 学部、癫痫护士协会（ESNA）和英国神经病学家协会（ABN）的成员。在六周的回复期后，将数据整理、匿名并分发给工作组，以便收集意见陈述。
新确诊和已确诊癫痫患者接受常规检查的时间通常至少为 1-3 个月，远远超过 NICE（CG20）的建议。少数临床医生不会考虑非药物干预，包括癫痫手术、迷走神经刺激和生酮饮食治疗。几乎所有的应答者都积极参与评估和管理关键风险领域，包括溺水、住院、药物副作用和癫痫猝死（SUDEP）的风险。
本调查确定了与护理提供和满足 ID 和癫痫患者复杂需求相关的关键主题和建议。ID 和癫痫的成年人似乎存在于癫痫护理提供的一个独特但不足的部分。
