Research priorities of endometriosis patients and supporters in Aotearoa New Zealand.

IF 1.4 4区 医学 Q3 OBSTETRICS & GYNECOLOGY
Katherine Ellis, Rachael Wood
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引用次数: 0

Abstract

Background: In New Zealand, an estimated 10% of women and people presumed female at birth have endometriosis, a disease characterised by the presence of tissue similar to the lining of the uterus, outside of the uterus.

Aims: The purpose of this study was to characterise the research priorities of New Zealand endometriosis patients and their support networks in alignment with an Australian study. This will allow researchers to be able to ensure their research aligns with closing research gaps prioritised by those who directly experience the impacts of the disease.

Methods and materials: There were 1262 responses to an online Qualtrics survey advertised through Endometriosis New Zealand's social media accounts and mailing list to reach endometriosis patients and their support networks.

Results: Overall, the highest research priorities for surgically or radiologically confirmed endometriosis patients, clinically suspected endometriosis patients, chronic pelvic pain patients, and their parents, partners, family members and friends were the management and treatment of endometriosis, followed by understanding endometriosis' cause, and improved capacity to diagnose endometriosis earlier. The key differences between the priorities of symptomatic participants and supporters were that symptomatic participants placed a significantly higher priority on understanding the cause of endometriosis, and supporters placed a significantly higher priority on improving the diagnosis of endometriosis.

Conclusions: There is alignment between the ranking of general research priority areas for endometriosis in Australasia, allowing for clear priorities for future research teams to structure their work around patient-centredness.

新西兰奥特亚罗瓦地区子宫内膜异位症患者和支持者的研究重点。
背景:在新西兰,估计有 10%的妇女和出生时被认为是女性的人患有子宫内膜异位症,这种疾病的特征是在子宫腔外存在类似子宫内膜的组织。这将使研究人员能够确保他们的研究与那些直接受到该疾病影响的人优先考虑的缩小研究差距相一致:通过新西兰子宫内膜异位症协会的社交媒体账户和邮件列表向子宫内膜异位症患者及其支持网络发布在线Qualtrics调查,共收到1262份回复:总体而言,经手术或放射学确诊的子宫内膜异位症患者、临床疑似子宫内膜异位症患者、慢性盆腔疼痛患者及其父母、伴侣、家人和朋友最优先考虑的研究是子宫内膜异位症的管理和治疗,其次是了解子宫内膜异位症的病因,以及提高早期诊断子宫内膜异位症的能力。有症状的参与者和支持者在优先考虑事项上的主要区别在于,有症状的参与者对了解子宫内膜异位症病因的优先考虑程度明显更高,而支持者对改善子宫内膜异位症诊断的优先考虑程度明显更高:结论:大洋洲子宫内膜异位症一般研究优先领域的排名是一致的,这为未来研究团队围绕以患者为中心开展工作提供了明确的优先顺序。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
3.40
自引率
11.80%
发文量
165
审稿时长
4-8 weeks
期刊介绍: The Australian and New Zealand Journal of Obstetrics and Gynaecology (ANZJOG) is an editorially independent publication owned by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) and the RANZCOG Research foundation. ANZJOG aims to provide a medium for the publication of original contributions to clinical practice and/or research in all fields of obstetrics and gynaecology and related disciplines. Articles are peer reviewed by clinicians or researchers expert in the field of the submitted work. From time to time the journal will also publish printed abstracts from the RANZCOG Annual Scientific Meeting and meetings of relevant special interest groups, where the accepted abstracts have undergone the journals peer review acceptance process.
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