Hi everyone, it’s Liz here again, with the latest installment from the AO Spine RECODE-DCM project! It has been an exciting past few weeks. The third and final consensus meeting took place on 1 June 2022 at the Global Spine Congress in Las Vegas, Nevada, USA.
To bring you up to speed, here is an outline of the AO Spine RECODE-DCM initiative so far:
1) In November 2019, the AO Spine RECODE-DCM group came together in New York for the inaugural consensus meeting, during which the Top 10 Research Priorities for DCM were established. The international group comprised people living with DCM, their carers, and also a range of their healthcare professionals (e.g. primary care practitioners, physiotherapists, neurologists and surgeons). The research priorities were distilled down from a list of 74 to the top 10, with equitable input from all participants, to provide a list of the most crucial questions to study in DCM. Through a Priority-Setting Partnership process overseen by the James Lind Alliance, the group ensured that these questions are relevant to the whole community of people affected by DCM – those living with the condition, those caring for them, and those treating them.
2) In October 2020, the second AO Spine RECODE-DCM consensus meeting was held virtually over Zoom. Despite the COVID-19 pandemic, the keen participation of the global DCM community was truly awe-inspiring. At this meeting, the Core Outcome Set was established. This is a list of the outcomes that matter most to people living with DCM as well as those who treat it. These outcomes include life impact, economic impact, pain, and neuromuscular function. Also, the Core Data Elements, such as demographic, co-morbidities, imaging and surgical details, were decided upon. Taken together, this constitutes what to measure in all DCM studies going forward. The goal is to align all future trials in DCM, to make them robust, reliable and comparable. If all future studies are recording the same things, this brings many benefits. For example,
- We can compare trials more easily, to learn whether an intervention worked or did not work for a subgroup of patients.
- We can learn how to predict the factors which cause faster or slower decline.
- We can even add the research of different groups together to bolster the numbers and thereby give more power to our statistical analyses.
Another important milestone was reached in 2020: the group came to a consensus over the name for the condition, “Degenerative Cervical Myelopathy” (or “DCM”). Therefore, the condition will henceforth be referred to under one name, DCM, instead of several different names (e.g. cervical stenosis, spondylotic myelopathy, OPLL). This enables the DCM community to speak a common language.
3) The third and final question is “how to measure it?” To provide an answer, the healthcare professionals from the RECODE-DCM group were invited to attend a consensus meeting during AO Spine’s annual congress, the Global Spine Congress 2022, in Las Vegas on 1 June. The group comprised a broad range of healthcare professionals with much-valued representation from people living with DCM. It was the perfect opportunity to synthesise their opinion on the best measurement tools for the job. Our sincere thanks go to AO Spine for hosting the consensus meeting at GSC2022.
The Core Outcome Set requires specific tools (e.g. tests, questionnaires, or protocols) to measure each outcome. Not all tools are created equally. Some are more reliable than others. Some have been validated in one demographic but not another. Some tools have less inter-observer reliability than others. Some tools take so long to complete in a clinical setting that they are impractical for use. The hardworking healthcare professionals of RECODE-DCM therefore came together to decide which measurement tools to use in all DCM research going forward. Factors which were considered were the tools’ quality, popularity, feasibility to use (i.e. not too onerous on the patient), and how relevant they were to the core outcomes.
The following measurement tools were selected by consensus:
- The modified Japanese Orthopaedic Assessment Scale (mJOA)
- The SF-36 Life Impact Scale
- The Neck Disability Index
- The Spinal Adverse Events Severity System
These tools were felt to be the best options at present for a Core Measurement Set. All investigators should find opportunities to extend these assessments in their trials, depending on their research question.
So, here, to summarise, is the combined output from AO Spine RECODE-DCM. We now know:
- which are the most important questions to study;
- what to call the disease: Degenerative Cervical Myelopathy (DCM);
- what all future studies should measure;
- how to measure it.
By following the guidance established by the AO Spine RECODE-DCM group, we can now make fast and efficient progress. At Myelopathy.org, that is our urgent, heartfelt ambition. The huge unmet burden of DCM is intolerable. We now need the DCM community to promote this guidance far and wide, to mobilise a capable and dedicated workforce, and to firmly establish AO Spine RECODE-DCM as THE framework for resolving the problem of DCM.
Let us remember that the Number 1 Research Priority is ‘Raising Awareness of DCM‘. This initiative has highlighted the shocking insufficiency of education and support, and the atrocious levels of public and professional awareness. It is the charity’s clear mandate to fulfill the role of awareness-raiser, and we can all play our part. Let’s increase the dialogue and education around this condition. Let’s tell our friends, our family, our doctors everything we have learned from AO Spine RECODE-DCM. Let’s elevate DCM as a medical priority among our healthcare policy-makers. Let’s remind people that chronic spinal cord injury is just as significant and far more prevalent than acute spinal cord injuries. Watch out for the short videos that my talented film crew from Cambridge TV and I will be releasing later this year, recorded during the consensus meetings, showcasing all that we have achieved and promoting the call-to-action for our next steps.
For me, the greatest accomplishment of AO Spine RECODE-DCM is the formation of an impassioned and dedicated community who are truly committed to streamlining and accelerating progress. This hardworking, diverse, multi-disciplinary group has exchanged perspectives, translated knowledge, broken down doctor–patient barriers, built up support networks, educated and learnt, made lifelong friendships, and also managed to have a lot of fun along the way. Incubator groups have been established to tackle the research priorities. Our own special issue of Global Spine Journal has been widely distributed free-of-charge. Podcast updates and newsletters are scheduled for periodic release. Myelopathy.org is increasing its impact and global reach. I cannot wait to see where we are this time next year and in subsequent years. I foresee a brighter future for all those affected by DCM.
My only regret upon leaving the Global Spine Congress 2022? That Ben and I backed out of our impulsive Las Vegas tattoos (although it’s inscribed on our hearts anyway): #MyelopathyMatters.
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