Department of Gynecology, Oslo University Hospital, Nydalen, P. O. BOX 4950, 0424, Oslo, Norway.
Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.
BMC Womens Health. 2022 Jun 10;22(1):219. doi: 10.1186/s12905-022-01798-8.
Endometriosis and adenomyosis are common benign conditions compromising both physical and psychological health, with a negative impact on quality of life. This survey aimed to establish what the users' perspectives are on best possible care in the context of developing a multidisciplinary center for endometriosis and adenomyosis in Norway.
An electronic questionnaire was developed in collaboration between the Norwegian Patient's Endometriosis Society (NPES) and gynecologists with special interest in endometriosis and adenomyosis. The questionnaire was distributed digitally to the members of NPES in May 2021.
938 participants answered the questionnaire. Better patient information, long term therapeutic plans and integration of their partners into their care were the main concerns. Multidisciplinary care was a key issue for the majority, with (n = 775) 89% stating a need for a consultation with a psychologist, (n = 744) 86% at least one consultation with a nutritionist, (n = 733) 85% a physiotherapist, and (n = 676) 78% needing a sex therapist and (n = 935) 99,7% consider research and (n = 934) 99,8% consider quality assurance initiated by the endometriosis center to be important. The qualitative analysis of free text answers revealed a great need for updated and easily accessible information, meeting competent health care professionals and being taken seriously/listened to.
This survey shows similar perceptions and a high level of agreement regarding their needs amongst people with endometriosis and/or adenomyosis. This survey supports recommendations by the experts that endometriosis/adenomyosis care should be centralized in specialized, multidisciplinary centers. The results of the present work will be valuable for the future planning and development of a multidisciplinary endometriosis center.
子宫内膜异位症和子宫腺肌病是常见的良性疾病，会影响身心健康，降低生活质量。本研究旨在了解挪威子宫内膜异位症和子宫腺肌病多学科中心发展过程中，患者对最佳治疗方案的看法。
挪威子宫内膜异位症患者协会（NPES）与对子宫内膜异位症和子宫腺肌病有特殊兴趣的妇科医生合作开发了电子问卷。该问卷于 2021 年 5 月以数字方式分发给 NPES 成员。
938 名参与者回答了问卷。更好的患者信息、长期治疗计划和将其伴侣纳入其治疗是主要关注点。大多数人认为多学科护理是关键，其中（n=775）89%表示需要咨询心理学家，（n=744）86%至少需要咨询营养师，（n=733）85%需要物理治疗师，（n=676）78%需要性治疗师，（n=935）99.7%认为研究很重要，（n=934）99.8%认为由子宫内膜异位症中心发起的质量保证很重要。对自由文本答案的定性分析显示，患者非常需要更新和易于获取的信息，需要与合格的医疗保健专业人员会面并得到认真对待/倾听。
本研究表明，子宫内膜异位症和/或子宫腺肌病患者对其需求的看法相似，且具有较高的一致性。本研究支持专家的建议，即子宫内膜异位症/子宫腺肌病的治疗应集中在专门的多学科中心。本研究的结果将对未来多学科子宫内膜异位症中心的规划和发展具有重要价值。
