Department of Neuromedicine and Movement Science, NTNU Norwegian University of Science and Technology, Trondheim, Norway.
Division of Brain Sciences, Imperial College London, London, UK.
Cephalalgia. 2022 Nov;42(13):1387-1396. doi: 10.1177/03331024221110102. Epub 2022 Jul 5.
Migraine-attributed burden, impact, disability and migraine-impacted quality of life are important concepts in clinical management, clinical and epidemiological research, and health policy, requiring clear and agreed definitions. We aimed to formulate concise and precise definitions of these concepts by expert consensus.
We searched the terms migraine-attributed burden, impact, disability and migraine-impacted quality of life in Embase and Medline from 1974 and 1946 respectively. We followed a Delphi process to reach consensus on definitions.
We found widespread conflation of concepts and inconsistent terminology within publications. Following three Delphi rounds, we defined as "the summation of all negative consequences of the disease or its diagnosis"; as "the effect of the disease, or its diagnosis, on a specified aspect of life, health or wellbeing"; as "physical, cognitive and mental incapacities imposed by the disease"; and as "the subjective assessment by a person with the disease of their general wellbeing, position and prospects in life". We complemented each definition with a detailed description.
These definitions and descriptions should foster consistency and encourage more appropriate use of currently available quantifying instruments and aid the future development of others.
偏头痛相关负担、影响、残疾和偏头痛影响的生活质量是临床管理、临床和流行病学研究以及卫生政策中的重要概念，需要明确和达成共识的定义。我们旨在通过专家共识制定这些概念的简洁准确的定义。
我们分别在 Embase 和 Medline 中检索了偏头痛相关负担、影响、残疾和偏头痛影响的生活质量的术语。我们遵循德尔菲流程，就定义达成共识。
我们发现概念上存在广泛的混淆，出版物中的术语也不一致。经过三轮德尔菲法，我们将定义为“疾病或其诊断的所有负面后果的总和”；定义为“疾病或其诊断对特定生活、健康或福利方面的影响”；定义为“疾病带来的身体、认知和精神能力丧失”；定义为“患有该疾病的人对其整体健康、地位和生活前景的主观评估”。我们为每个定义都提供了详细的描述。
这些定义和描述应促进一致性，并鼓励更恰当地使用现有的量化工具，有助于未来开发其他工具。
