BACKGROUND:Scientific and financial investments in chronic cerebrospinal venous insufficiency (CCSVI) research have been made to address both the hope for and scepticism over this interventional strategy for MS. Despite limited evidence in support of the CCSVI hypothesis, the funding of clinical research was responsive to a demand by the public rarely seen in the history of medicine. We characterize patient perspectives about the CCSVI research trajectory, with particular attention to its impact on other non-pharmaceutical areas of MS research with a focus on stem cell interventions. METHODS:Semi-structured interviews with 20 MS patients across Canada who did not have CCSVI interventions. Interviews were analysed for recurring themes and individual variations using the constant comparative approach. RESULTS:Participants had a critical view of the divestment of funds from longstanding research to support CCSVI trials. They retain a sense of optimism, however, about emerging evidence for stem cell interventions for MS, and highlight the need for greater caution and conscientious communication of advances in medicine and science. CONCLUSIONS:The unrealized hopes for CCSVI challenged but did not undermine the resilience of patient communities. The narrative that unfolded highlights the importance of drawing a socially-minded space for public participation in science.

译文

背景:在慢性脑脊髓静脉功能不全(CCSVI)研究中进行了科学和财政投资,以解决对MS的这种干预策略的希望和怀疑态度。尽管支持CCSVI假说的证据有限,但临床研究的资金还是对公众的需求做出了回应,而公众的需求在医学史上很少见。我们刻画了患者对CCSVI研究轨迹的观点,特别关注了它对MS研究的其他非药物领域的影响,重点是干细胞干预。
方法:对加拿大20例未接受CCSVI干预的MS患者进行半结构式访谈。使用不变的比较方法,对访谈进行了主题重复和个体变化的分析。
结果:参与者对从长期研究中撤资以支持CCSVI试验的观点持批判性看法。然而,他们对MS的干细胞干预的新证据仍保持乐观的态度,并强调需要对医学和科学的进步给予更多的谨慎和认真的沟通。
结论:对CCSVI的未实现的希望挑战了,但并未破坏患者社区的复原力。展开的叙述突出了为公众参与科学绘制具有社会意识的空间的重要性。

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