The lack of consistency in outcome measurement within the field of acquired brain injury (ABI) leads to incomparability of collected data and, consequently, reduced generalisation of findings. We aim to develop a set of standardised measures which can be used to obtain the minimum amount of data necessary to characterise ABI-patients across all healthcare sectors and disciplines and in every stage of recovery; i.e., an ABI-specific minimal dataset (MDS-ABI). The current study was conducted to identify the core outcome domains for adults with ABI (what to measure?) and to select the most suitable measurements within these domains (how to measure it?). An initial comprehensive set of outcome domains and measurement instruments relevant for measuring the consequences of ABI was identified by a literature study. The selection of relevant domains was based on the International Classification of Functioning, Disability and Health framework. Measurement instruments were included in the Delphi procedure when they met pre-set requirements. A three-round Delphi study was conducted among Dutch experts (n = 48) using iterative web-based surveys to prioritise the proposed domains and instruments for the MDS-ABI. Throughout all rounds, participants could recommend additional or alternative domains and measurement instruments, and were fed back the collated group responses of the previous round. Response rates ranged from 89 to 100%. After three rounds, the expert panel reached consensus (≥51%) on the inclusion of 12 outcome domains (demographics, injury characteristics, comorbidity, cognitive functioning, emotional functioning, energy, mobility, self-care, communication, participation, social support and quality of life), measured with six measurement instruments, two screening questions and a registry of demographic- and injury information. No consensus was reached on how to measure quality of life. The current study achieved consensus on the content of a minimal dataset for patients with ABI. The current version of the MDS-ABI will be evaluated and optimised if necessary in the near future.

中文翻译：

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使用Delphi程序定义获得性脑损伤的最小数据集的内容。

在获得性脑损伤（ABI）领域中，结果测量缺乏一致性会导致所收集数据的不可比性，因此，结果的概括性降低。我们旨在制定一套标准化的措施，可用于获取表征所有医疗保健部门和学科以及康复的每个阶段中的ABI患者所需的最少数据量；即特定于ABI的最小数据集（MDS-ABI）。进行当前的研究是为了确定成人ABI的核心结局域（要测量什么？），并在这些域中选择最合适的度量（如何测量？）。一项文献研究确定了与ABI后果相关的一组初步的全面结果域和度量工具。相关领域的选择是基于《国际功能，残疾与健康分类》框架的。当满足预设要求时，将测量仪器包括在Delphi程序中。在荷兰专家（n = 48）中进行了为期三轮的Delphi研究，使用基于网络的迭代调查对MDS-ABI的拟议领域和工具进行了优先排序。在所有回合中，参与者可以推荐其他或替代的领域和度量工具，并反馈上一回合整理的小组答复。回应率从89％到100％不等。经过三轮，专家小组在包括12个结果域（人口统计学，伤害特征，合并症，认知功能，情绪功能，精力，行动力，自我保健，交流，参与，社会支持和生活质量），使用六种测量工具，两个筛查问题以及人口统计和伤害信息登记表进行测量。在如何衡量生活质量方面未达成共识。当前的研究在ABI患者最小数据集的内容上达成了共识。如果需要，在不久的将来将对MDS-ABI的当前版本进行评估和优化。