RECODE-DCM Study

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
Pain
Arm
 
 
 
 
 
 
 
 
 
 
Finger/hand
 
 
 
 
 
 
 
 
 
 
Lower limb
 
 
 
 
 
 
 
 
 
 
Neck
 
 
 
 
 
 
 
 
 
 
Headache
 
 
 
 
 
 
 
 
 
 
Muscle spasms/shaking
 
 
 
 
 
 
 
 
 
 
Pain control
 
 
 
 
 
 
 
 
 
 
Other Symptoms
Restless legs
 
 
 
 
 
 
 
 
 
 
Urinary incontinence
 
 
 
 
 
 
 
 
 
 
Difficulty passing urine
 
 
 
 
 
 
 
 
 
 
Faecal incontinence
 
 
 
 
 
 
 
 
 
 
Nocturia
 
 
 
 
 
 
 
 
 
 
Arm weakness
 
 
 
 
 
 
 
 
 
 
Leg weakness
 
 
 
 
 
 
 
 
 
 
Balance
 
 
 
 
 
 
 
 
 
 
Manual dexterity
 
 
 
 
 
 
 
 
 
 
Finger strength
 
 
 
 
 
 
 
 
 
 
Grip strength
 
 
 
 
 
 
 
 
 
 
Breathlessness
 
 
 
 
 
 
 
 
 
 
Numbness
 
 
 
 
 
 
 
 
 
 
Paraesthesia
 
 
 
 
 
 
 
 
 
 
Sweating/temperature dysregulation
 
 
 
 
 
 
 
 
 
 
Radiology
Cervical spine alignment
 
 
 
 
 
 
 
 
 
 
Adjacent segment degeneration
 
 
 
 
 
 
 
 
 
 
Adequate decompression
 
 
 
 
 
 
 
 
 
 
Cord signal change
 
 
 
 
 
 
 
 
 
 
Function
Falls
 
 
 
 
 
 
 
 
 
 
Mobility
 
 
 
 
 
 
 
 
 
 
Ability to drive
 
 
 
 
 
 
 
 
 
 
Altered sex life
 
 
 
 
 
 
 
 
 
 
Retribution
 
 
 
 
 
 
 
 
 
 
Insomnia
 
 
 
 
 
 
 
 
 
 
Fatigue
 
 
 
 
 
 
 
 
 
 
Relationship problems
 
 
 
 
 
 
 
 
 
 
Helplessness
 
 
 
 
 
 
 
 
 
 
Quality of Life
Anticipatory anxiety
 
 
 
 
 
 
 
 
 
 
Frustration
 
 
 
 
 
 
 
 
 
 
Variability
 
 
 
 
 
 
 
 
 
 
Dependence
 
 
 
 
 
 
 
 
 
 
Stigma
 
 
 
 
 
 
 
 
 
 
Isolation
 
 
 
 
 
 
 
 
 
 
Problems with mental health
 
 
 
 
 
 
 
 
 
 
Acceptance of symptoms
 
 
 
 
 
 
 
 
 
 
Vitality
 
 
 
 
 
 
 
 
 
 
Financial
Employment status
 
 
 
 
 
 
 
 
 
 
Length of treatment
 
 
 
 
 
 
 
 
 
 
Cost of care
 
 
 
 
 
 
 
 
 
 
Supporter financial problems
 
 
 
 
 
 
 
 
 
 
Supporter quality of life
 
 
 
 
 
 
 
 
 
 
Complications
Medication side effects
 
 
 
 
 
 
 
 
 
 
Readmission to hospital
 
 
 
 
 
 
 
 
 
 
Revision surgery
 
 
 
 
 
 
 
 
 
 
Dysphagia
 
 
 
 
 
 
 
 
 
 
Dysphonia
 
 
 
 
 
 
 
 
 
 
C5 nerve palsy
 
 
 
 
 
 
 
 
 
 
Other new radiculopathy
 
 
 
 
 
 
 
 
 
 
Spinal cord injury
 
 
 
 
 
 
 
 
 
 
Epidural haematoma
 
 
 
 
 
 
 
 
 
 
CSF leak
 
 
 
 
 
 
 
 
 
 
Dural tear
 
 
 
 
 
 
 
 
 
 
Wound infection
 
 
 
 
 
 
 
 
 
 
Spinal fusion
 
 
 
 
 
 
 
 
 
 
Failure of spinal fusion
 
 
 
 
 
 
 
 
 
 
Death
 
 
 
 
 
 
 
 
 
 

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
Individual
Mental Health
 
 
 
 
 
 
 
 
 
Obesity
 
 
 
 
 
 
 
 
 
Diabetes
 
 
 
 
 
 
 
 
 
Smoking status
 
 
 
 
 
 
 
 
 
Other neurological disease
 
 
 
 
 
 
 
 
 
Other disease
 
 
 
 
 
 
 
 
 
Performance status
 
 
 
 
 
 
 
 
 
Age
 
 
 
 
 
 
 
 
 
Biological sex
 
 
 
 
 
 
 
 
 
Ethnicity
 
 
 
 
 
 
 
 
 
Medication
 
 
 
 
 
 
 
 
 
Illness coping/resilience
 
 
 
 
 
 
 
 
 
Welfare support
 
 
 
 
 
 
 
 
 
Family history of DCM
 
 
 
 
 
 
 
 
 
Length of symptoms
 
 
 
 
 
 
 
 
 
Disease
Rate of progression
 
 
 
 
 
 
 
 
 
Presence of myelopathy with radiculopathy
 
 
 
 
 
 
 
 
 
Number of previous surgeries
 
 
 
 
 
 
 
 
 
Definition of DCM
 
 
 
 
 
 
 
 
 
Investigation
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)
 
 
 
 
 
 
 
 
 
Interventions
Nerve root injection
 
 
 
 
 
 
 
 
 
Operation type
 
 
 
 
 
 
 
 
 
Operated level(s)
 
 
 
 
 
 
 
 
 
Instrumentation
 
 
 
 
 
 
 
 
 
Approach (anterior/posterior/combined)
 
 
 
 
 
 
 
 
 
Intraoperative neurophysiology
 
 
 
 
 
 
 
 
 
Post-operative collar