Core Outcomes Set - Round 1 Survey

Principal Investigators: Mark R. Kotter and Benjamin M. Davies.

You have been randomised to participate in the Core Outcome Set and Core Data Elements stream, a process to define the core outcomes and measurements to be included in future DCM research.

What is a Core Outcomes Set (COS)?

A COS is a collaboration between people with a medical condition, their careers, health care professionals and researchers that aims to determine what outcomes should be assessed as a minimum in DCM research. This aims to address the common problem, whereby different researchers measure different outcomes, preventing pooled analysis.

What Happens During Participation?

This process starts by defining what should be measured. This is not the same as how something should be measured, which is a later stage, once what should be measured is finalised. This process starts with an online Delphi survey and a face-to-face consensus meeting.

Below you will find the opening round of the Delphi survey, which will take about 10-20 minutes to complete. The list of outcomes and data elements so far is based upon what is currently measured in DCM research. You will be asked to rate the importance of measuring these outcomes on a scale of 0 (not important at all) to 9 (extremely important). You will also have the opportunity to add in outcomes or data elements you think are missing. The outcomes and data elements have been grouped for convenience.

After Round 1 closes, these findings will then be processed, before we invite you to participate a second time. In Round 2 you will be presented with the results of Round 1 (the overall results, the results per group of experts, and your previous rating). This will give you the opportunity to change your rating if you so wish, but also to rate newly suggested outcomes. For the CDE we will also provide a summary of the evidence base for the significance of any data point, if available. After Round 2 the results will be processed and reviewed. Any outcomes that have not achieved consensus will be discussed at the face-to-face consensus meeting.

It is very important that you complete all rounds of the survey. Without full completion we are unable to include your valuable contribution in our study. This risks some key groups being underrepresented, which may influence our findings. However, please be aware that you are free to withdraw from the study at any point.

Core Outcomes

Please rate the following outcomes based on how important you think they are to measure. This is the longest but last page of the survey - it should take less than 10 minutes to complete. If you need to take a break, you can leave the survey at any time and return where you left off by clicking the initial survey link or by navigating through your browser history.

1-3 = Not important.
4-6 = Important but not critical.
7-9 = Critical.
  1 2 3 4 5 6 7 8 9 I don't know
Lower limb
Muscle spasms/shaking
Pain control
Other Symptoms
Restless legs
Urinary incontinence
Difficulty passing urine
Faecal incontinence
Arm weakness
Leg weakness
Manual dexterity
Finger strength
Grip strength
Sweating/temperature dysregulation
Cervical spine alignment
Adjacent segment degeneration
Adequate decompression
Cord signal change
Ability to drive
Altered sex life
Relationship problems
Quality of Life
Anticipatory anxiety
Problems with mental health
Acceptance of symptoms
Employment status
Length of treatment
Cost of care
Supporter financial problems
Supporter quality of life
Medication side effects
Readmission to hospital
Revision surgery
C5 nerve palsy
Other new radiculopathy
Spinal cord injury
Epidural haematoma
CSF leak
Dural tear
Wound infection
Spinal fusion
Failure of spinal fusion

Core Data Elements

Because you are a healthcare professional who cares for people with DCM, you have also been selected to help decide which data elements should form the core data elements for future DCM research.

What are Core Data Elements (CDE)?

CDE are the additional baseline measurements that are important for interpreting outcomes. This may be because they influence an outcome or because they will help understand whether a finding is relevant to the person you are treating. Common examples are age or biological sex. It is important to remember that most outcomes are measured before and after an intervention. CDE are additional data points which must be measured to ensure the research is useful.

Core Data Elements

Please rate the following outcomes based on how important you think they are to measure.

1-3 = Not important.
4-6 = Important but not critical.
7-9 = Critical.
  1 2 3 4 5 6 7 8 9
Mental Health
Smoking status
Other neurological disease
Other disease
Performance status
Biological sex
Illness coping/resilience
Welfare support
Family history of DCM
Length of symptoms
Rate of progression
Presence of myelopathy with radiculopathy
Number of previous surgeries
Definition of DCM
Level(s) of spinal cord compression
Pathology causing spinal cord compression
Presence of spinal cord signal change
Amount of spinal cord compression
Structured non-operative management (e.g. physiotherapy)
Nerve root injection
Operation type
Operated level(s)
Approach (anterior/posterior/combined)
Intraoperative neurophysiology
Post-operative collar