King Jenny, Killpack Caroline
Picker Institute Europe, Oxford, UK.
Womens Health (Lond). 2025 Jan-Dec;21:17455057251358042. doi: 10.1177/17455057251358042. Epub 2025 Jul 28.
Understanding experiences of care for endometriosis is an important source of evidence for supporting the improvement of care quality for this long-term condition. Patient-reported experience measures are a key tool for providing this insight. However, in England, there is no national survey of experiences of endometriosis care, making it difficult to understand where care is working well and how it can be improved.
This scoping review aimed to identify and describe existing surveys globally for measuring patient experience of care for people with endometriosis.
The population of interest included people with endometriosis. The concept was questionnaires in any format (e.g. article or web-based) exploring the experience of care for endometriosis in the context of any care setting.
PubMed and ProQuest databases were searched between August and September 2024.
Information extracted included study information (e.g. article title, authors, year of publication, research objectives, country), inclusion/exclusion criteria (e.g. population, concept, context) and patient experience measure characteristics (e.g. name of experience measure, number of questions, domains of person-centred care, survey mode and contact approach, development process).
Out of the 209 articles screened, only seven surveys were identified for inclusion in the review. These surveys varied in context, number of items, domains of care, survey mode and contact approach. Most of the surveys focussed narrowly on one aspect of care, such as diagnosis or inpatient treatment, and three surveys included only two questions related to patient experience. Only one survey, the ENDOCARE Questionnaire, covered all eight Picker Principles of Person-Centred Care.
With only a small number of surveys identified and only one capturing all core aspects of person-centred care, there are limited resources available for those wishing to understand and improve care quality for people with endometriosis.
了解子宫内膜异位症的护理体验是支持改善这种长期病症护理质量的重要证据来源。患者报告的体验指标是提供这种见解的关键工具。然而，在英格兰，没有针对子宫内膜异位症护理体验的全国性调查，这使得难以了解护理在哪些方面运作良好以及如何改进。
本范围综述旨在识别和描述全球现有的用于测量子宫内膜异位症患者护理体验的调查。
感兴趣的人群包括子宫内膜异位症患者。概念是任何形式（如文章或基于网络）的问卷，在任何护理环境背景下探索子宫内膜异位症的护理体验。
在2024年8月至9月期间检索了PubMed和ProQuest数据库。
提取的信息包括研究信息（如文章标题、作者、发表年份、研究目标、国家）、纳入/排除标准（如人群、概念、背景）和患者体验测量特征（如体验测量名称、问题数量、以患者为中心的护理领域、调查方式和联系方法、开发过程）。
在筛选的209篇文章中，仅识别出7项调查纳入综述。这些调查在背景、项目数量护理领域调查方式和联系方法等方面各不相同。大多数调查只狭隘地关注护理的一个方面，如诊断或住院治疗，三项调查仅包括两个与患者体验相关的问题。只有一项调查，即ENDOCARE问卷，涵盖了以患者为中心的护理的所有八项皮克尔原则。
由于仅识别出少量调查，且只有一项涵盖了以患者为中心的护理的所有核心方面，对于那些希望了解和改善子宫内膜异位症患者护理质量的人来说，可用资源有限。
