Dannenberg Michelle, Mengoni Silvana E, Gates Bob, Durand Marie-Anne
The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth College, Lebanon, NH USA.
Department of Psychology, University of Hertfordshire Higher Education Corporation, UK.
Seizure. 2016 Oct;41:16-25. doi: 10.1016/j.seizure.2016.06.022. Epub 2016 Jul 1.
People with intellectual disabilities (ID) experience higher incidences of chronic health conditions, poorer health outcomes, and increased risk of premature death. Epilepsy is 20 times more common in people with ID than in the general population. It tends to be more difficult to diagnose, more severe, and more difficult to treat. Improving epilepsy self-management in this group is advocated in guidelines for best practice. However, few self-management interventions exist, and a robust examination of their effectiveness is missing. Our aim was to identify existing self-management interventions for epilepsy in people with ID and to analyze their impact.
A scoping review using Arksey and O'Malley's framework was conducted. Medline, EMBASE, CINAHL, PsycInfo, OpenSIGLE, the Cochrane Database of Systematic Reviews, and Web of Science were searched from inception until June 2015. Using a piloted charting tool, selected articles were thematically analyzed.
An initial search identified 570 articles, of which five met the inclusion criteria. Pilot and randomized controlled feasibility study findings suggest that self-management interventions targeted at people with ID are acceptable to this population, improve epilepsy-related knowledge, improve seizure frequency, and show potential to improve quality of life. A randomised controlled trial of a self-management intervention is currently underway.
Studies evaluating self-management interventions for people with epilepsy and ID are sparse. Our findings demonstrate the potential for self-management interventions to improve outcomes in this population. Controlled studies with comparable measures and longer follow-ups are needed to rigorously assess the impact of self-management interventions on this patient population.
智力残疾（ID）患者患慢性健康状况的发生率更高，健康结局更差，过早死亡风险增加。癫痫在ID患者中的发病率是普通人群的20倍。其诊断往往更困难，病情更严重，治疗也更困难。最佳实践指南提倡改善该群体的癫痫自我管理。然而，现有的自我管理干预措施很少，且缺乏对其有效性的有力检验。我们的目的是确定针对ID患者的现有癫痫自我管理干预措施，并分析其影响。
采用Arksey和O'Malley的框架进行范围综述。检索了Medline、EMBASE、CINAHL、PsycInfo、OpenSIGLE、Cochrane系统评价数据库和科学网，检索时间从建库至2015年6月。使用预先试验的图表工具对选定的文章进行主题分析。
初步检索确定了570篇文章，其中5篇符合纳入标准。试点和随机对照可行性研究结果表明，针对ID患者的自我管理干预措施为该人群所接受，可提高癫痫相关知识，降低癫痫发作频率，并显示出改善生活质量的潜力。一项自我管理干预的随机对照试验目前正在进行中。
评估针对癫痫和ID患者的自我管理干预措施的研究很少。我们的研究结果表明自我管理干预措施有可能改善该人群的结局。需要进行具有可比测量方法和更长随访时间的对照研究，以严格评估自我管理干预措施对该患者群体的影响。
