Welcome back to the Core Outcome Set 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.
Below you will find the second round Delphi survey. A Delphi survey 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, and then you are asked the same questions again, but shown the collective results from all participants. This is to help reach a consensus on what is most important.
Therefore, below, you will find the outcomes that were present in Round 1, 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.