Development of a Core Outcome Set for Dysphagia Interventions in Parkinson’s disease: the COS-DIP Study
Why is this study being done?
Swallowing difficulties (dysphagia) are common in people with Parkinson's disease. Research studies of swallowing treatments need to be able to measure how well the treatment works, but also what side effects it may have and how they may affect patients. Researchers do this by measuring outcomes. Examples of outcomes include quality of life and severity of swallowing difficulty.
So far researchers have been using different outcomes when conducting these studies. Some for example measure quality of life and others do not. Furthermore, people living with Parkinson's disease and swallowing difficulties, family members and family caregivers have not been involved in deciding what to measure in these research studies. Thus, the results of the research might have little importance to them.
The aim of this study was to find out what the most important outcomes to measure are when assessing if a swallowing treatment for people with Parkinson's disease works. We developed a minimum standard (a core outcome set) of what should be measured and how it should be measured in research studies on swallowing treatments for people with Parkinson's disease.
The video below describes how the COS-DIP study reached agreement on the most important outcomes and presents the six core outcomes.
Who and what was involved in the study?
People living with Parkinson’s disease and swallowing difficulties, family members and caregivers, healthcare professionals and researchers were involved in the development of the COS-DIP. Overall, this was a larger study that comprised the following stages:
1. Study protocol
• The study protocol outlines all steps of this research project. For more information click here
2. Scoping Review
• A systematic literature search (scoping review) identifying outcomes that have been used in research studies on swallowing interventions in Parkinson’s disease. For more information click here.
3. Online survey and focus groups
• An online survey and group interviews (focus groups) with people living with Parkinson’s disease and swallowing difficulties, family members and caregivers to find out what outcomes matter to them most when deciding if a swallowing treatment works. For more information click here.
• Additionally, an online survey with dysphagia clinicians to find out what outcomes matter to them most when deciding if a swallowing treatment works [manuscript submitted for publication].
4. Delphi survey and consensus meetings
• Three consecutive, online surveys (so called Delphi surveys) with people living with Parkinson’s disease and swallowing difficulties, family members and caregivers, healthcare professionals and researchers to identify the most important outcomes. Afterwards, we conducted two online consensus meetings to agree on all core outcomes, definitions, methods and timepoints of measurement. Click here for more information.
We have also written a viewpoint article on “Measuring What Matters in Parkinson’s Disease Research and Dysphagia: The Need for Core Outcome Sets”. You can read the paper here.
More information
If you would like any further information about the COS-DIP study, please do not hesitate to contact Julia Hirschwald via email at cosdip.tcd@gmail.com.