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Systems and culture
Developing Diagnostic Criteria for Degenerative Cervical Myelopathy
Background
People with degenerative cervical myelopathy (DCM), an age-related condition that causes injury to the spinal cord due to compression, often aren’t diagnosed correctly until their symptoms are moderate or even severe. If the signs and symptoms of the condition aren’t picked up in time, patients can miss out on being assessed by the right specialist. This delay can lead to incomplete recovery from surgery, lifelong disability, and potential unemployment.
Over time, cord compression can result in a wide range of motor and sensory symptoms in both the upper and lower extremities as well as autonomic dysfunction (when the autonomic nervous system, which controls functions responsible for well-being and maintaining balance, does not regulate itself properly). It can also cause serious neck and arm pain, difficulty in carrying out daily activities, reduced quality of life, and loss of independence.
In the UK, the average time it takes to diagnose DCM is two to five years – but treatment outcomes are best for people who are diagnosed within six months. The disease doesn’t always develop in the same way. Some people experience rapid disease progression, but others experience a slower decline in neurological function that may include long periods of stability. There is little public – or professional – awareness of DCM, compounding issues with timely diagnosis.
The Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM) project team was established in 2019, aiming to improve research in DCM. The team established 10 research priorities for DCM through consensus with healthcare professionals, patients and carers – one of which was the development of diagnostic criteria.
The RECODE-DCM team has created a long list of symptoms and clinical signs that could indicate the presence of DCM. The aim is now to distil this long list down to a set of diagnostic criteria for the condition.
Approach
- We will bring together healthcare professionals to rank symptoms and clinical signs and tell us how helpful they are in making a diagnosis of DCM. The results will support the development of diagnostic criteria for DCM.
- This project forms part of THIS Institute’s Improvement Core programme.
Project team
Dr Benjamin Davies
Cambridge School of Clinical Medicine
recode@myelopathy.org
Project team
Funding and ethics
This project is funded by Myelopathy.org – the first global scientific and clinical charity dedicated to positively transforming patient outcomes in Degenerative Cervical Myelopathy (DCM), and the Health Foundation’s grant to THIS Institute.
The study will be conducted by the Academic Division of Neurosurgery, Department of Clinical Neurosciences at the University of Cambridge, in collaboration with researchers from THIS Institute. The study was reviewed by the Human Biology Research Ethics Committee.
Take part in the study
We’re looking for healthcare professionals who are familiar with degenerative cervical myelopathy to rank symptoms and clinical signs and tell us how helpful they are in making a diagnosis. The results will help improve the identification of people with DCM