BACKGROUND The Endometriosis Health Profiles (EHPs), the EHP-30 and EHP-5, are patient-reported outcome measures that were developed to measure the health-related quality of life (HRQoL) of women living with endometriosis. Prior to their development, a systematic review was undertaken which identified that the HRQoL of women living with endometriosis was poorly understood, with only three medical and one surgical study identified. OBJECTIVE AND RATIONALE The 20-year anniversary of the EHP-30 provided a timely opportunity to assess how the tools have been used and explore what the findings tell us about the impact of endometriosis and its associated treatments upon women's QoL. Applying robust systematic review methodology, following PRISMA guidelines, we sought to answer: How many studies have used the EHP and for what purpose?; What are the demographic characteristics and international context of the studies?; What is the methodological nature and quality of the studies?; Which interventions have been assessed and what are the reported EHP outcomes?; and Can the EHP outcomes of these interventions be analysed using a meta-analysis and, if so, what do the results show? SEARCH METHODS The electronic databases MEDLINE, CINAHL, PsycINFO, PubMed, and Google Scholar were searched from the year the EHP was first published, in 2001 to 26 February 2020 using the search terms 'EHP30', 'EHP5', 'EHP-30', 'EHP-5', 'endometriosis health profile 30', and 'endometriosis health profile 5'. We updated the searches on 9 April 2021. All included studies were quality assessed using the Mixed Methods Appraisal Tool (MMAT). OUTCOMES The review included 139 papers. In clinical intervention studies, the EHPs were deployed most frequently to measure the outcomes of medical (n = 35) and surgical (n = 21) treatment. The EHPs were also used in 13 other intervention studies, 29 non-interventional studies, 32 psychometric/cross cultural validation studies; six diagnostic studies, and in three other studies to measure outcomes in related conditions. They were mainly deployed in studies undertaken in Europe and North America. Overall, regardless of the nature of the intervention, most women reported improvements in HRQoL after treatment. Surgical interventions generally resulted in significant improvements for the longest amount of time. There was also evidence that when participants stopped taking medication their EHP scores worsened, perhaps reinforcing the temporary impact of medical treatment. Younger patients reported more negative impact upon their HRQoL. Further evidence using classical test theory to support the EHPs' robust psychometric properties, including acceptability, dimensionality, reliability, validity (including cross-cultural), and responsiveness, was demonstrated, particularly for the EHP-30. Strikingly, using anchor-based methods, EHP-30 responsiveness studies demonstrate the largest mean changes in the 'control and powerlessness' domain post-intervention, followed by 'pain'. MMAT outcomes indicated the quality of the papers was good, with the exception of five studies. A meta-analysis was not undertaken owing to the heterogeneity of the interventions and papers included in this review. WIDER IMPLICATIONS Women with endometriosis face a lifetime of surgical and/or medical interventions to keep the condition under control. Less invasive treatments that can lead to improved longer term physical and psycho-social outcomes are needed. The EHPs are reliable, valid, acceptable, and responsive tools, but more assessment of EHP outcomes using modern psychometric methods and in the context of women from ethnically diverse backgrounds and in routine clinical care would be beneficial. Given the brevity of the EHP-5, it may be the most appropriate version to use in routine clinical practice, whereas the longer EHP-30, which provides more granularity, is more appropriate for research.

中文翻译：

---

一项系统评价，以确定使用子宫内膜异位症健康状况来衡量子宫内膜异位症女性的生活质量结果。


背景 子宫内膜异位症健康概况 （EHP），EHP-30 和 EHP-5，是患者报告的结果测量，旨在衡量子宫内膜异位症女性的健康相关生活质量 （HRQoL）。在他们开发之前，进行了一项系统评价，发现子宫内膜异位症女性的 HRQoL 知之甚少，仅确定了 3 项医学研究和 1 项外科研究。客观和基本原理EHP-30 成立 20 周年提供了一个及时的机会来评估这些工具的使用方式，并探索研究结果告诉我们子宫内膜异位症及其相关治疗对女性 QoL 的影响。应用稳健的系统综述方法，遵循 PRISMA 指南，我们试图回答：有多少研究使用了 EHP，目的是什么？研究的人口特征和国际背景是什么？;研究的方法性质和质量如何？评估了哪些干预措施，报告的 EHP 结局是什么？以及是否可以使用荟萃分析来分析这些干预措施的 EHP 结果，如果是这样，结果显示了什么？检索方法 从 EHP 首次发表的那一年，即 2001 年至 2020 年 2 月 26 日，使用检索词“EHP30”、“EHP5”、“EHP-30”、“EHP-5”、“子宫内膜异位症健康状况 30”和“子宫内膜异位症健康状况 5”检索了电子数据库 MEDLINE、CINAHL、PsycINFO、PubMed 和 Google Scholar。我们于 2021 年 4 月 9 日更新了检索内容。所有纳入的研究都使用混合方法评价工具（MMAT）进行质量评估。结果 本综述纳入了 139 篇论文。 在临床干预研究中，EHP 最常用于测量药物 （n = 35） 和手术 （n = 21） 治疗的结果。EHP 还用于其他 13 项干预研究、29 项非干预研究、32 项心理测量/跨文化验证研究;六项诊断性研究，以及另外三项测量相关疾病结局的研究。它们主要部署在欧洲和北美进行的研究中。总体而言，无论干预的性质如何，大多数女性报告治疗后 HRQoL 有所改善。手术干预通常在最长的时间内导致显着改善。还有证据表明，当参与者停止服药时，他们的 EHP 评分会恶化，这可能加强了药物治疗的暂时影响。年轻患者报告了对其 HRQoL 的更多负面影响。使用经典测试理论支持 EHP 强大的心理测量特性的进一步证据，包括可接受性、维度、可靠性、有效性（包括跨文化）和响应性，特别是对于 EHP-30。引人注目的是，使用基于锚的方法，EHP-30 反应性研究表明，干预后 “控制和无能为力 ”领域的平均变化最大，其次是 “痛苦”。MMAT 结局表明，除 5 项研究外，论文质量良好。由于本综述中纳入的干预措施和论文的异质性，未进行荟萃分析。更广泛的影响 患有子宫内膜异位症的女性一生都要接受手术和/或医疗干预，以控制病情。 需要可以改善长期身体和心理社会结局的微创治疗。EHP 是可靠、有效、可接受且反应灵敏的工具，但使用现代心理测量方法并在来自不同种族背景和常规临床护理的女性的背景下对 EHP 结果进行更多评估将是有益的。鉴于 EHP-5 的简洁性，它可能是最适合在常规临床实践中使用的版本，而较长的 EHP-30 提供更多粒度，更适合研究。