Davies Benjamin M, Munro Colin, Khan Danyal Z, Fitzpatrick Siobhan M, Hilton Bryn, Mowforth Oliver D, McNair Angus G K, Sadler Iwan, Kotter Mark R N
Division of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK.
Department of Psychology, University of Warwick, Coventry, UK.
Global Spine J. 2022 Apr;12(3):432-440. doi: 10.1177/2192568220953811. Epub 2020 Nov 18.
Mixed-methods cross-sectional study.
Degenerative cervical myelopathy (DCM) is a common and disabling condition. While classically, assessment and diagnosis has focused on neuromuscular symptoms, many other disabilities have been linked. The aim of this study was to explore the consequences of DCM for those with lived experience, producing a long list to inform the development of a core outcome set for DCM research.
A 2-stage process was used: a focus group session of people with DCM (PwCM) and their supporters (n = 8) discussed the impact of DCM. This was used to develop a preliminary list of consequences, which were then placed into a survey of an online community of DCM sufferers (n = 224). Survey participants were asked to tick the consequences that they had experienced and given the opportunity to submit additional. Additional consequences were reviewed by a group of healthcare professionals and PwCM and included if not already represented. Demographic information including disease severity, age, and sex were captured for sampling comparison.
A total of 52 outcomes were identified from the focus group and nominally divided into 2 categories; symptoms (36 outcomes) and handicaps (18 outcomes), and further evaluated using a survey. All outcomes were recognized by at least 5% of respondents. A further 16 outcomes were added following the survey.
A list of DCM consequences has been defined from the perspective of PwCM. This will now be evaluated as part of AO Spine RECODE-DCM, an international multistakeholder collaboration to establish a core outcome set for research.
混合方法横断面研究。
退行性颈椎病（DCM）是一种常见且致残的疾病。传统上，评估和诊断主要关注神经肌肉症状，但也发现了许多其他相关的残疾情况。本研究的目的是探讨DCM对患者生活的影响，列出一份详细清单，为制定DCM研究的核心结局集提供参考。
采用两阶段流程：组织一次由DCM患者（PwCM）及其支持者（n = 8）参与的焦点小组会议，讨论DCM的影响。据此制定一份初步的影响清单，然后将其纳入对一个DCM患者在线社区（n = 224）的调查中。调查参与者被要求勾选他们所经历的影响，并可提交其他未列出的影响。一组医疗保健专业人员和PwCM对新增的影响进行了审核，若未涵盖则予以纳入。收集了包括疾病严重程度、年龄和性别在内的人口统计学信息用于抽样比较。
焦点小组共确定了52项结局，名义上分为两类：症状（36项结局）和障碍（18项结局），并通过调查进一步评估。所有结局均得到至少5%的受访者认可。调查后又增加了16项结局。
从PwCM的角度定义了一份DCM影响清单。现在将作为AO Spine RECODE - DCM的一部分进行评估，AO Spine RECODE - DCM是一项国际多方利益相关者合作项目，旨在建立研究的核心结局集。
