What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals
What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals
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DOI：
10.1136/bmjopen-2018-026573
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发表时间：
2019-06-01
期刊：
影响因子：
2.9
通讯作者：
Sinclair, Alexandra J.
中科院分区：
文献类型：
--
作者：
Mollan, Susan;Hemmings, Krystal;Sinclair, Alexandra J.
目的特发性颅内高压（IIH）研究不足，目的是确定该疾病的10大研究重点。设计采用改良的名义组技术，吸引有IIH经验的参与者。设置此James Lind联盟优先设置伙伴关系由IIH英国慈善机构委托。参与者IIH患者，照顾者，家人和朋友，和医疗保健专业人员参加了两轮调查，以确定目前证据未回答的独特研究问题。结果IIH的前10大研究重点包括IIH的病因学、IIH头痛的病理机制、IIH的新治疗方法、急性视力丧失与渐进性视力丧失的区别、监测视功能的最佳方法、IIH的生物标志物、IIH的激素病因、IIH的治疗方法等。药物治疗头痛，体重减轻及其在IIH中的作用，最后，最好的干预措施，以治疗IIH，什么时候应该手术performed.Conclusions这种优先设置鼓励IIH的直接经验的人集体确定现有证据的关键差距。首要的研究愿望是了解IIH的病因和管理。
Objective Idiopathic intracranial hypertension (IIH) is under-researched and the aim was to determine the top 10 research priorities for this disease.Design A modified nominal group technique was used to engage participants who had experience of IIH.Setting This James Lind Alliance Priority Setting Partnership was commissioned by IIH UK, a charity.Participants People with IIH, carers, family and friends, and healthcare professionals participated in two rounds of surveys to identify unique research questions unanswered by current evidence. The most popular 26 uncertainties were presented to stakeholders who then agreed the top 10 topics.Results The top 10 research priorities for IIH included aetiology of IIH, the pathological mechanisms of headache in IIH, new treatments in IIH, the difference between acute and gradual visual loss, the best ways to monitor visual function, biomarkers of the disease, hormonal causes of IIH, drug therapies for the treatment of headache, weight loss and its role in IIH and finally, the best intervention to treat IIH and when should surgery be performed.Conclusions This priority setting encouraged people with direct experience of IIH to collectively identify critical gaps in the existing evidence. The overarching research aspiration was to understand the aetiology and management of IIH.