Core Outcomes Set - Round 2 Survey

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

Welcome back to 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 outcome set (COS)?

We would like to welcome you to our COS workflow. A COS is a collaboration between people with a medical condition, their carers, health care professionals and researchers that aims to determine what outcomes should be assessed as a minimum in DCM research.

What is the problem we are addressing?

At the moment, different studies often measure different outcomes. For instance, imagine two studies on how to treat DCM.
- Study A - researchers measure grip strength as an outcome
- Study B - researchers measure symptoms of pain as an outcome
When the two studies are finished, we cannot compare or combine their results because they have used different outcomes. We would not be comparing like with like. This creates inefficiency in research.

If all studies on a particular health condition used the same outcomes, they could all be compared and combined. This would reduce waste by making the best use of all the research. When a set of main outcomes has been agreed for a health condition, it is called a core outcome set.

What Next?

Below you will find the second round survey.

In order to help reach consensus, data points that were present in Round 1 are pre-populated with your vote and a graph (beneath it) to display the spread of scores of each subgroup. This will give you an idea of the collective views of different stakeholders. Any comments submitted by participants (shown as [number of comments] in red) can also be viewed against the specific score.

New additional outcomes suggested from Round 1, are now also included but will not be accompanied by graphs as they have not been voted on yet.

Please rate the importance of measuring these outcomes on a scale of 0 (not important at all) to 9 (extremely important).

Based on the collective results of these surveys, data points will be either included in the core set, rejected as ‘not core‘, or taken forward for further discussion in a face to face consensus meeting if there is uncertainty.

Core Outcomes

Please rate the following outcomes based on how important you think they are to measure in future DCM research. This is the longest but last page of the survey - it should about 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
Chest pain
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
Shoulder Mobility
Neck Mobility
Sweating/temperature dysregulation
Cervical spine alignment
Adjacent segment degeneration
Adequate decompression
Cord signal change
Ability to drive
Altered sex life
Cognition / Confusion
Relationship problems
Quality of Life
Anticipatory anxiety
Problems with mental health
Acceptance of symptoms
Employment status
Length of treatment
Cost of care
Length of hospitalisation
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
Horner‘s Syndrome

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.

Again, using the votes from Round 1, we have created graphs to display the spread of scores of each subgroup to give you an idea of the views of different stakeholders. The matrix is pre-filled with your votes from Round 1, please review the graphs consider whether this influences your vote - if so, please change your score accordingly. New data points have also been added from your suggestions in Round 1, however, they will not be accompanied by graphs as they have yet to be voted on.

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
Lumbar or Thoracic Canal Stenosis
Parkinson's Disease
Other neurological disease
Other disease
Performance status