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国际成人癫痫常规治疗结局与测量方法国际标准集的制定:国际健康结局测量联合会共识建议。

Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Adults with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations.

机构信息

Institute of Systems, Molecular and Integrative Biology (ISMIB), University of Liverpool, Liverpool, UK.

International Consortium for Health Outcomes Measurement, London, UK.

出版信息

Epilepsia. 2024 Jul;65(7):1916-1937. doi: 10.1111/epi.17971. Epub 2024 May 13.

Abstract

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. Therefore, the International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy and their representatives to develop minimum sets of standardized outcomes and outcomes measurement methods for clinical practice that support patient-clinician decision-making and quality improvement. Consensus methods identified 20 core outcomes. Measurement tools were recommended based on their evidence of strong clinical measurement properties, feasibility, and cross-cultural applicability. The essential outcomes included many non-seizure outcomes: anxiety, depression, suicidality, memory and attention, sleep quality, functional status, and the social impact of epilepsy. The proposed set will facilitate the implementation of the use of patient-centered outcomes in daily practice, ensuring holistic care. They also encourage harmonization of outcome measurement, and if widely implemented should reduce the heterogeneity of outcome measurement, accelerate comparative research, and facilitate quality improvement efforts.

摘要

目前,国际上尚没有一套公认的癫痫临床实践核心结局或测量方法。因此,国际健康结局测量联合会(ICHOM)召集了一个由癫痫、癫痫患者及其代表的国际专家工作组,制定了支持患者与临床医生决策以及质量改进的临床实践标准化结局和结局测量方法的最小集。共识方法确定了 20 项核心结局。根据其具有较强临床测量特性、可行性和跨文化适用性,推荐了测量工具。基本结局包括许多非发作性结局:焦虑、抑郁、自杀意念、记忆和注意力、睡眠质量、功能状态以及癫痫的社会影响。所提出的方案将有助于在日常实践中实施以患者为中心的结局,确保全面护理。它们还鼓励结局测量的协调统一,如果广泛实施,应该减少结局测量的异质性,加速比较研究,并促进质量改进工作。

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