RECODE-DCM Study

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
Pain
Arm
 
 
 
 
 
 
 
 
 
 
Finger/hand
 
 
 
 
 
 
 
 
 
 
Lower limb
 
 
 
 
 
 
 
 
 
 
Neck
 
 
 
 
 
 
 
 
 
 
Headache
 
 
 
 
 
 
 
 
 
 
Chest pain
 
 
 
 
 
 
 
 
 
 
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
 
 
 
 
 
 
 
 
 
 
Tremor
 
 
 
 
 
 
 
 
 
 
Shoulder Mobility
 
 
 
 
 
 
 
 
 
 
Neck Mobility
 
 
 
 
 
 
 
 
 
 
Breathlessness
 
 
 
 
 
 
 
 
 
 
Vision
 
 
 
 
 
 
 
 
 
 
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
 
 
 
 
 
 
 
 
 
 
Cognition / Confusion
 
 
 
 
 
 
 
 
 
 
Insomnia
 
 
 
 
 
 
 
 
 
 
Fatigue
 
 
 
 
 
 
 
 
 
 
Relationship problems
 
 
 
 
 
 
 
 
 
 
Helplessness
 
 
 
 
 
 
 
 
 
 
Quality of Life
Anticipatory anxiety
 
 
 
 
 
 
 
 
 
 
Frustration
 
 
 
 
 
 
 
 
 
 
Stamina
 
 
 
 
 
 
 
 
 
 
Variability
 
 
 
 
 
 
 
 
 
 
Dependence
 
 
 
 
 
 
 
 
 
 
Stigma
 
 
 
 
 
 
 
 
 
 
Isolation
 
 
 
 
 
 
 
 
 
 
Problems with mental health
 
 
 
 
 
 
 
 
 
 
Acceptance of symptoms
 
 
 
 
 
 
 
 
 
 
Vitality
 
 
 
 
 
 
 
 
 
 
Employment status
 
 
 
 
 
 
 
 
 
 
Financial
Length of treatment
 
 
 
 
 
 
 
 
 
 
Cost of care
 
 
 
 
 
 
 
 
 
 
Length of hospitalisation
 
 
 
 
 
 
 
 
 
 
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
 
 
 
 
 
 
 
 
 
 
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
Individual
Mental Health
 
 
 
 
 
 
 
 
 
Obesity
 
 
 
 
 
 
 
 
 
Diabetes
 
 
 
 
 
 
 
 
 
Smoking status
 
 
 
 
 
 
 
 
 
Lumbar or Thoracic Canal Stenosis
 
 
 
 
 
 
 
 
 
Parkinson's Disease
 
 
 
 
 
 
 
 
 
Other neurological disease
 
 
 
 
 
 
 
 
 
Other disease
 
 
 
 
 
 
 
 
 
Performance status
 
 
 
 
 
 
 
 
 
Age