Department Mother and Child, Leuven University Fertility Centre, Leuven University Hospital, Leuven, Belgium.
Hum Reprod. 2011 Nov;26(11):2988-99. doi: 10.1093/humrep/der277. Epub 2011 Sep 6.
Endometriosis is prevalent and women need high-quality care, which should be patient-centered. This study aimed to develop a valid and reliable patient-centeredness questionnaire, based on a defined concept of patient-centered endometriosis care (PCEC).
A literature review, focus groups (FGs) with patients and an expert panel defined PCEC with 10 dimensions. The ENDOCARE questionnaire (ECQ) was developed. FGs resulted in 43 specific statements covering the 10 dimensions of PCEC, for which the ECQ measured 'importance' and 'performance'. Medical and demographic questions and an open question were added. The Dutch ECQ questionnaire was piloted and reciprocally translated into English and Italian. Patients with endometriosis from Belgium, The Netherlands, Italy and the UK were invited to complete the ECQ online. Item analysis, inter-item analysis and confirmatory and exploratory factor analyses (EFA) and reliability analysis were performed. The theory-driven dimensions were adapted.
The ECQ was completed by 541 patients. Based on item analysis, five statements were deleted. Factor analysis was performed on 322 questionnaires (only from respondents with a partner). Insights from the data-driven EFA suggested adaptations of the theory-driven dimensions. The reliability statistics of 9/10 adapted theory-driven dimensions were satisfactory and the root mean square error of approximation was good.
This study resulted in a valid and reliable instrument to measure PCEC. For data presentation, the adapted theory-driven dimensions of PCEC are preferred over the data-driven factors. The ECQ may serve to benchmark patient-centeredness, conduct cross-cultural European research and set targets for improvement.
子宫内膜异位症较为普遍，患者需要高质量的护理，这种护理应当以患者为中心。本研究旨在基于明确的以患者为中心的子宫内膜异位症护理（PCEC）概念，开发一种有效且可靠的以患者为中心的问卷。
通过文献回顾、患者焦点小组（FGs）和专家小组定义了 PCEC 包含 10 个维度，在此基础上开发了 ENDOCARE 问卷（ECQ）。FGs 产生了涵盖 PCEC 10 个维度的 43 个具体表述，ECQ 用于测量这些表述的“重要性”和“绩效”。问卷还添加了医疗和人口统计学问题以及一个开放式问题。对荷兰 ECQ 问卷进行了预试验，并将其反向翻译成英语和意大利语。邀请来自比利时、荷兰、意大利和英国的子宫内膜异位症患者在线填写 ECQ。进行了项目分析、项目间分析以及验证性和探索性因子分析（EFA）和可靠性分析。对理论驱动的维度进行了调整。
541 名患者完成了 ECQ。基于项目分析，删除了 5 个表述。对 322 份问卷（仅来自有伴侣的受访者）进行了因子分析。数据驱动的 EFA 提供了对理论驱动维度进行调整的见解。9/10 个经调整的理论驱动维度的可靠性统计数据令人满意，近似均方根误差良好。
本研究开发了一种有效且可靠的测量 PCEC 的工具。为了数据呈现，建议使用经调整的理论驱动维度，而非数据驱动的因素。ECQ 可用于基准测试以患者为中心的护理水平、开展跨文化的欧洲研究并设定改进目标。
