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, carers and family members have not been involved in deciding what to measure in these research studies. Thus, the results of the resarch might have little importance to them.
We are doing this study 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 aim to develop 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.
If you would like, you can watch this video to get a better understanding of what the COS-DIP project is about:
What will the study involve?
This is a larger study that comprises several different stages. These are outlined in Figure 1 and the text below.
Figure 1: Stages of the COS-DIP development process
- A systematic literature search (scoping review) to identify what outcomes have been used in research studies on swallowing interventions in Parkinson’s disease. The publication can be found here.
- An online survey and thereafter group interviews (focus groups) with people living with Parkinson’s disease and swallowing difficulties, their carers and family members to find out what outcomes matter to them most when deciding if a swallowing treatment works.Thereafter, an online survey with dysphagia clinicians to find out what outcomes matter to them most when deciding if a swallowing treatment works.
- Three consecutive, online Delphi surveys with dysphagia clinicians, researchers, people living with Parkinson’s disease and swallowing difficulties, their carers and family members to identify the most important outcomes.
- Two online consensus meeting to agree on all core outcomes, definitions, methods and timepoints of measurement
Stage 2 of the COS-DIP project
We have recently conducted an online survey and thereafter focus group interviews with people with Parkinson's disease and swallowing difficulties, their caregivers and family members. Many thanks to all the participants who took part in the survey and interviews! You can watch this video, to get a better understanding of what the survey was about:
Interested in participating in stage 3 of the COS-DIP project?
- Are you a person living with Parkinson’s disease and swallowing difficulties, a carer or family member?
- Are you a healthcare professional providing care for people with Parkinson’s disease and swallowing difficulties?
- Are you conducting research on swallowing interventions for people with Parkinson’s disease?
Yes? Then we would highly appreciate your participation and contribution to the development of the COS-DIP.
Please register your interest by using this google form. We will contact you via email thereafter.
You can watch a video here to get a better understanding of what the online Delphi survey and consensus meeting are about:
If you would like any further information about the COS-DIP study or some parts of the project, please do not hesitate to contact Julia Hirschwald via email at firstname.lastname@example.org.