PDF(Pubmed)
Abstract：
Background and Objectives: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions. Determining where to prioritise these limited funds is therefore vital. Research priorities may also differ between individuals with endometriosis and clinicians/researchers. The aim of this research project is to explore research priorities and factors shaping participation in endometriosis research from the perspective of people with endometriosis in Australia. Materials and Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently desired research on treatment options for symptom management, with many prioritising non-hormonal treatments, including medicinal cannabis and complementary medicine. Others prioritised research on the causes of endometriosis over research on treatments to assist with prevention and eventual cure of the disease. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important in supporting participation included ease of access to testing centres (e.g., for blood tests) and sharing test results and automated data collection reminders, with simple stra-tegies to record data measurements. Research incentives for younger people with endometriosis and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive a child. Conclusions: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation.
摘要：
背景和目的：子宫内膜异位症会导致严重的个人和社会负担。尽管如此,研究经费落后于其他慢性病。因此，确定在哪里优先考虑这些有限的资金至关重要。子宫内膜异位症患者和临床医生/研究人员之间的研究重点也可能有所不同。该研究项目的目的是从澳大利亚子宫内膜异位症患者的角度探讨研究重点和影响子宫内膜异位症研究参与的因素。材料与方法：采用定性归纳内容分析法对涉及30名子宫内膜异位症患者的4个焦点组进行分析。结果：从数据中得出两个类别：未满足的研究需求以及参与子宫内膜异位症研究的动机和障碍。参与者表示有兴趣开发非侵入性诊断工具和更多多学科或整体的治疗方法。参与者迫切需要对症状管理的治疗方案进行研究，许多人优先考虑非激素治疗，包括药用大麻和补充药物。其他人则优先研究子宫内膜异位症的原因而不是治疗方法的研究，以帮助预防和最终治愈疾病。参与子宫内膜异位症研究的主要驱动因素是希望症状改善和减少诊断时间。支持参与的研究设计功能包括易于进入测试中心(例如，用于血液测试)并共享测试结果和自动数据收集提醒，用简单的stra-tegies记录数据测量。对患有子宫内膜异位症的年轻人的研究激励和有关研究项目的信息的广泛传播被认为可能会增加参与者的数量。障碍包括时间承诺，数据收集的研究任命缺乏灵活性，旅行或工作承诺，担心某些产品的安全性，并试图怀上一个孩子。结论：子宫内膜异位症患者愿意参与他们认为符合他们需求的研究，重点关注诊断工具和症状缓解。然而,研究人员必须共同设计方法，以确保研究参与的便利性和灵活性。
