van Middendorp J J, Allison H C, Ahuja S, Bracher D, Dyson C, Fairbank J, Gall A, Glover A, Gray L, Masri W El, Uttridge A, Cowan K
National Spinal Injuries Centre, Stoke Mandeville Hospital, Buckinghamshire NHS Trust, Aylesbury, UK.
Stoke Mandeville Spinal Research, National Spinal Injuries Centre, Stoke Mandeville Hospital, Buckinghamshire NHS Trust, Aylesbury, UK.
Spinal Cord. 2016 May;54(5):341-6. doi: 10.1038/sc.2015.199. Epub 2015 Nov 10.
This is a mixed-method consensus development project.
The objective of this study was to identify a top ten list of priorities for future research into spinal cord injury (SCI).
The British Spinal Cord Injury Priority Setting Partnership was established in 2013 and completed in 2014. Stakeholders included consumer organisations, healthcare professional societies and caregivers.
This partnership involved the following four key stages: (i) gathering of research questions, (ii) checking of existing research evidence, (iii) interim prioritisation and (iv) a final consensus meeting to reach agreement on the top ten research priorities. Adult individuals with spinal cord dysfunction because of trauma or non-traumatic causes, including transverse myelitis, and individuals with a cauda equina syndrome (henceforth grouped and referred to as SCI) were invited to participate in this priority setting partnership.
We collected 784 questions from 403 survey respondents (290 individuals with SCI), which, after merging duplicate questions and checking systematic reviews for evidence, were reduced to 109 unique unanswered research questions. A total of 293 people (211 individuals with SCI) participated in the interim prioritisation process, leading to the identification of 25 priorities. At a final consensus meeting, a representative group of individuals with SCI, caregivers and health professionals agreed on their top ten research priorities.
Following a comprehensive, rigorous and inclusive process, with participation from individuals with SCI, caregivers and health professionals, the SCI research agenda has been defined by people to whom it matters most and should inform the scope and future activities of funders and researchers for the years to come.
The NIHR Oxford Biomedical Research Centre provided core funding for this project.
这是一个混合方法的共识发展项目。
本研究的目的是确定脊髓损伤(SCI)未来研究的十大优先事项清单。
英国脊髓损伤优先事项设定伙伴关系于2013年成立,并于2014年完成。利益相关者包括消费者组织、医疗专业协会和护理人员。
该伙伴关系涉及以下四个关键阶段:(i)收集研究问题,(ii)检查现有研究证据,(iii)临时优先排序,以及(iv)最终共识会议,以就十大研究优先事项达成一致。因创伤或非创伤性原因导致脊髓功能障碍的成年人,包括横贯性脊髓炎患者,以及马尾综合征患者(以下统称为SCI患者)被邀请参与这一优先事项设定伙伴关系。
我们从403名调查受访者(290名SCI患者)那里收集了784个问题,在合并重复问题并检查系统评价以获取证据后,这些问题减少到109个独特的未回答研究问题。共有293人(211名SCI患者)参与了临时优先排序过程,从而确定了25个优先事项。在最终的共识会议上,一组由SCI患者、护理人员和健康专业人员组成的代表就他们的十大研究优先事项达成了一致。
经过一个全面、严格且包容的过程,在SCI患者、护理人员和健康专业人员的参与下,SCI研究议程由最相关的人群确定,应能为资助者和研究人员未来几年的研究范围和活动提供参考。
英国国家卫生研究院牛津生物医学研究中心为该项目提供了核心资金。