Endometriosis Center, Department of Reproductive Medicine, Research Institute Amsterdam Reproduction and Development, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
Endometriose Stichting, Dutch Endometriosis Patient Organization, Sittard, The Netherlands.
Gynecol Obstet Invest. 2021;86(6):542-548. doi: 10.1159/000520495. Epub 2021 Nov 26.
Endometriosis is a chronic gynaecologic disease, causing pain and infertility. As there is no definitive cure, patients are subjected to long-term care. This study aimed to improve patient-centred endometriosis care. Patient-centredness of endometriosis care can be evaluated using the validated ENDOCARE questionnaire (ECQ), resulting in centre-specific targets for improvement. To understand how to tackle the targets for improvement as found by the ECQ, focus groups can be organized.
This protocol presents a prospective study with a mixed-methods approach to improve patient-centredness of endometriosis care. The study consists of 5 steps: (1) evaluating current patient-centredness of endometriosis care by using the ECQ, (2) understanding targets for improvement, (3) drafting an improvement plan, (4) implementing improvements, and (5) evaluating the improved patient-centredness of endometriosis care. The final evaluation will be performed 1.5 years after implementing the improvement plan.
Patient-centredness will be evaluated using the ECQ by inviting women with endometriosis to participate (steps 1 and 5). To investigate step 2, focus groups will be organized. For these focus groups, women with endometriosis are asked to participate until data saturation is achieved. During focus groups, participants are motivated to discuss the found targets for improvement and stimulated to find ways to improve them. The drafting and implementing of the improvement plan (steps 3 and 4) will be organized with the help of health-care providers in close collaboration with the patient organization. To assess whether the implementation of the improvement plan was successful in improving endometriosis care, the results from the ECQ in step 5 will be compared to the results from the ECQ in step 1. Ethical approval was granted by the local Institutional Review Board (Ref 2018.438).
The study was conducted in the university hospital in the Netherlands.
Both patients and health-care providers will be involved in drafting the improvement plan. By making the health-care providers responsible for improving care, the chance of succeeding is optimized. Whether this improvement strategy is successful will be investigated after the implementation of the improvement plan. The improvement plan is clinic specific and can possibly not be extrapolated to other endometriosis clinics. In order to aim to improve patient-centred endometriosis care elsewhere, the complete study protocol should be performed.
This study protocol aimed to investigate focus groups as a strategy to identify possible interventions to improve patient-centred endometriosis care by investigating the underlying causes for poor performance on patient-centred care. This study protocol could be used in more endometriosis care centres in the future and might also be useful for improving patient-centredness in other chronic diseases.
子宫内膜异位症是一种慢性妇科疾病，会导致疼痛和不孕。由于没有明确的治疗方法，患者需要长期护理。本研究旨在改善以患者为中心的子宫内膜异位症护理。可以使用经过验证的 ENDOCARE 问卷（ECQ）评估以患者为中心的子宫内膜异位症护理的患者中心程度，从而为每个中心设定具体的改进目标。为了了解如何解决 ECQ 发现的改进目标，可以组织焦点小组。
本方案提出了一项前瞻性研究，采用混合方法来提高子宫内膜异位症护理的以患者为中心程度。该研究包括 5 个步骤：（1）使用 ECQ 评估当前以患者为中心的子宫内膜异位症护理；（2）了解改进目标；（3）起草改进计划；（4）实施改进；（5）评估改进后的子宫内膜异位症护理的以患者为中心程度。实施改进计划 1.5 年后将进行最终评估。
通过邀请子宫内膜异位症患者参与，使用 ECQ 评估以患者为中心的程度（步骤 1 和 5）。为了研究第 2 步，将组织焦点小组。对于这些焦点小组，邀请子宫内膜异位症患者参与，直到达到数据饱和。在焦点小组中，鼓励参与者讨论发现的改进目标，并激励他们寻找改进方法。在患者组织的密切合作下，在卫生保健提供者的帮助下，组织起草和实施改进计划（步骤 3 和 4）。在步骤 5 中，将比较 ECQ 的结果，以评估实施改进计划是否成功改善了子宫内膜异位症护理。研究获得了当地机构审查委员会的伦理批准（参考号 2018.438）。
该研究在荷兰的大学医院进行。
患者和卫生保健提供者都将参与起草改进计划。通过让卫生保健提供者负责改进护理，成功的机会就得到了优化。实施改进计划后，将调查该改进策略是否成功。改进计划是特定于诊所的，可能无法推广到其他子宫内膜异位症诊所。为了在其他地方改善以患者为中心的子宫内膜异位症护理，应执行完整的研究方案。
本研究方案旨在通过研究导致以患者为中心的护理表现不佳的根本原因，探讨焦点小组作为一种确定改善以患者为中心的子宫内膜异位症护理的干预措施的策略。未来，可以在更多的子宫内膜异位症护理中心使用本研究方案，也可能有助于改善其他慢性疾病的以患者为中心程度。
