Harzif Achmad Kemal, Anisa Beryliana Maya, Suarthana Eva, Maharani Cut Rika, Nora Hilwah, Permana Ade, Mutia Heidi Dewi, Ummah Nafi'atul, Nurbaeti Putri, Puspawardani Aisyah Retno, Wiweko Budi
Department of Obstetrics and Gynecology, Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia.
Human Reproduction, Infertility, and Family Planning Research Center, Indonesian Medical Education and Research Institute, Jakarta, Indonesia.
Heliyon. 2024 Oct 28;10(21):e39914. doi: 10.1016/j.heliyon.2024.e39914. eCollection 2024 Nov 15.
Endometriosis has a high recurrence rate within five years (40-50 %). High recurrence remarkably reduces Health-Related Quality of Life (HRQOL). Patient-centered endometriosis care (PCEC) is a range of care that respects the patient's preferences and needs while being guided by the patient's values and may provide better treatment for patients. Our study is the first to evaluate the implementation of PCEC in Indonesia.
We evaluated PCEC at Dr. Cipto Mangunkusumo Hospital in Jakarta (Center-1), Raden Mattaher Hospital in Jambi, and dr. Zainoel Abidin Hospital in Aceh (Center-2) from October 2021 to May 2022. Center-1 represented tertiary care, and center-2 represented secondary care. This study used the ENDOCARE Questionnaire (ECQ) instrument, which produced mean important score (MIS), percentage of negative performance (PNP), and patient-centeredness score (PCS) as outcomes. Higher PCS reflects greater patient-centered care of the center.
A total of 73 patients were recruited and divided into two groups of centers. Patients from Center-1 had significantly higher patient-centeredness scores vs. patients in centers without the training and guideline: dimension "Respect for patients' values, preferences, and needs" (Center-1 7.33, 6-10, Center-2 6, 6-6; p < 0.001), dimension "Coordination and integration of care" (Center-1 6, 4.44-8.67, Center-2 5.5, 4-6; p = 0.006), dimension "Information, communication, and education" (Center-1 7.14, 6-8.29, Center-2 5.14, 5.14-6; p < 0.001), dimension "Physical comfort" (Center-1 6, 6-8, Center-2 6, 6-6; p = 0.033), dimension "Endometriosis clinical staff" (Center-1 6, 6-9, Center-2 6, 6-6, p = 0.049). Subjects with higher education and experienced endometriosis recurrences statistically had higher patient-centeredness scores.
Our findings suggest that endometriosis training and having endometriosis clinical guidelines could improve patients' experience in receiving PCEC. Information for patients should be made simple so they can understand the purpose of the treatment.
子宫内膜异位症在五年内具有较高的复发率（40%-50%）。高复发率显著降低了健康相关生活质量（HRQOL）。以患者为中心的子宫内膜异位症护理（PCEC）是一系列在患者价值观的指导下尊重患者偏好和需求的护理方式，可能为患者提供更好的治疗。我们的研究是首次在印度尼西亚评估PCEC的实施情况。
我们于2021年10月至2022年5月在雅加达的西托·曼古库苏莫博士医院（中心1）、占碑的拉登·马塔赫尔医院和亚齐的宰努勒·阿比丁博士医院（中心2）评估了PCEC。中心1代表三级护理，中心2代表二级护理。本研究使用了ENDOCARE问卷（ECQ）工具，其产生的平均重要得分（MIS）、负面表现百分比（PNP）和以患者为中心的得分（PCS）作为结果。更高的PCS反映了该中心对患者的护理更加以患者为中心。
共招募了73名患者并分为两组中心。与未接受培训和未遵循指南的中心的患者相比，来自中心1的患者具有显著更高的以患者为中心的得分：“尊重患者价值观、偏好和需求”维度（中心1为7.33，范围6-10；中心2为6，范围6-6；p<0.001），“护理的协调与整合”维度（中心1为6，范围4.44-8.67；中心2为5.5，范围4-6；p=0.006），“信息、沟通与教育”维度（中心1为7.14，范围6-8.29；中心2为5.14，范围5.14-6；p<0.001），“身体舒适度”维度（中心1为6，范围6-8；中心2为6，范围6-6；p=0.033），“子宫内膜异位症临床工作人员”维度（中心1为6，范围6-9；中心2为6，范围6-6，p=0.049）。统计学上，受过高等教育且有子宫内膜异位症复发经历的受试者具有更高的以患者为中心的得分。
我们的研究结果表明，子宫内膜异位症培训和拥有子宫内膜异位症临床指南可以改善患者接受PCEC的体验。应使提供给患者的信息简单易懂，以便他们能够理解治疗的目的。
