Praxis für Chinesische Medizin, 53113 Bonn, Germany.
School of Psychology, Western Sydney University, Penrith, NSW 2751, Australia.
Medicina (Kaunas). 2023 Sep 13;59(9):1655. doi: 10.3390/medicina59091655.
: 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. : Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. : 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. : 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.
内异症给个人和社会带来了巨大的负担。尽管如此，其研究资金仍落后于其他慢性病。因此，确定将这些有限的资金优先用于何处至关重要。内异症患者和临床医生/研究人员的研究重点也可能不同。本研究项目旨在从澳大利亚内异症患者的角度探讨研究重点和影响参与内异症研究的因素。
共进行了 4 次包含 30 名内异症患者的焦点小组讨论，并使用定性归纳内容分析法进行分析。
未满足的研究需求以及参与内异症研究的动机和障碍。参与者对内异症非侵入性诊断工具和多学科或整体治疗方法的开发表现出兴趣。参与者迫切希望开展针对症状管理的治疗选择的研究，许多人优先选择非激素治疗，包括医用大麻和补充医学。其他人则将内异症病因的研究优先级高于治疗方法的研究，以帮助预防和最终治愈这种疾病。参与内异症研究的主要动力是希望改善症状和缩短诊断时间。支持参与的研究设计特征包括方便获取检测中心（例如，用于血液检测）以及共享检测结果和自动数据采集提醒，同时采用简单的策略记录数据测量。为内异症年轻患者提供研究激励措施，并广泛宣传研究项目信息，这被认为可能会增加参与者人数。障碍包括时间承诺、数据收集研究预约的灵活性不足、旅行或工作承诺、对某些产品安全性的担忧，以及想要怀孕的愿望。
内异症患者愿意参与他们认为符合其需求的研究，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。
