Patient and Population Health and Informatics Research, College of Medicine, Swansea University, Swansea, UK
Cardiff and Vale University Health Board, Heath Park, Cardiff, UK.
J Crohns Colitis. 2015 Mar;9(3):284-92. doi: 10.1093/ecco-jcc/jjv002. Epub 2015 Jan 9.
Several measures have been developed to assess the health-related quality of life [HRQoL] of patients with inflammatory bowel disease [IBD]. Our aim is to systematically review the HRQoL measures specific for patients with IBD and to appraise their measurement properties and methodological quality.
We searched the PubMed, Embase, and PsycINFO databases for original articles describing the development and/or evaluation of one or more of the measurement properties [e.g. internal consistency, reliability, validity, responsiveness] of HRQoL measures specific for IBD. We assessed the measurement properties and examined the methodological quality of the measurement properties of each instrument using a standardized checklist.
We examined the full text of 75 articles that we deemed potentially eligible and identified 10 disease-specific HRQoL measures in IBD that covered different aspects of patients' lives. Internal consistency, construct validity, and content validity were the commonly evaluated measurement properties. Seven HRQoL measures scored positive for at least four of eight measurement properties. The majority of studies were rated as 'fair' to 'poor' when assessing their methodology quality. The most established HRQoL measure in the literature was the Inflammatory Bowel Disease Questionnaire [IBDQ].
Most of the included HRQoL measures did not include all the required measurement properties or had a problem with their methodological quality. The most widely used and validated measure was the IBDQ. Further validation studies are required to support the use of other HRQoL measures.
已经开发出了几种评估炎症性肠病（IBD）患者健康相关生活质量（HRQoL）的方法。我们的目的是系统地综述 IBD 患者特定的 HRQoL 测量方法，并评价其测量特性和方法学质量。
我们检索了 PubMed、Embase 和 PsycINFO 数据库，以查找描述一种或多种特定于 IBD 的 HRQoL 测量方法的发展和/或评估的原始文章，这些测量方法包括内部一致性、可靠性、有效性和反应度等。我们使用标准化的检查表评估了每个工具的测量特性，并检查了测量特性的方法学质量。
我们对 75 篇被认为可能符合条件的文章进行了全文审查，并确定了 10 种用于评估 IBD 患者不同生活方面的特定于疾病的 HRQoL 测量方法。内部一致性、结构有效性和内容有效性是常用的评价测量特性。有 7 种 HRQoL 测量方法在至少 8 项测量特性中的 4 项上得分较高。在评估方法学质量时，大多数研究的评分均为“一般”至“较差”。文献中最成熟的 HRQoL 测量方法是炎症性肠病问卷（IBDQ）。
大多数纳入的 HRQoL 测量方法没有包含所有必需的测量特性，或者在方法学质量上存在问题。使用最广泛和验证最充分的测量方法是 IBDQ。需要进一步的验证研究来支持其他 HRQoL 测量方法的使用。
