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 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 careers, 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 Happens During Participation?

A COS 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. The COS consists of an online Delphi survey and a face-to-face consensus meeting.

Below you will find the opening round of the Delphi survey, with each survey taking between 10-20 minutes. A Delphi is a technique where you (a group of DCM experts) are asked a series of questions about what you believe the most important DCM outcomes are. The list of outcomes so far is based upon what is currently measured in DCM research and a series of interviews conducted with people with DCM. 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 you think are missing. These outcomes have been grouped into categories.

After Round 1 closes, the findings will 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 ratings). This will give you the opportunity to change your rating if you so wish, but also to rate newly suggested outcomes. 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
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
Anticipatory anxiety
Quality of Life
Problems with mental health
Acceptance of symptoms
Employment status of person with DCM
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

Are there any other outcomes that you think are important to measure but aren‘t represented in the above list?

If so, please list them in the box below.

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NOTE: Your answer is required before you can see other experts' arguments...
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