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Design in brief
Participants in the Multi-year Long COVID study received an annual invitation for a questionnaire. Based on their answers, a personal overview was created for them. This gave them insight into the course of their complaints, the impact thereof on their lives and their healthcare use. C-support has continued to compile an annual personal overview. The participants receive an annual invitation for a shortened questionnaire. This happens one year after completing the last questionnaire. The new round will start in April 2025.
The questionnaire is shorter than the questionnaire of the Multi-year Long COVID study. Depending on your situation, it takes about 30 minutes to complete. The results are used to create a personal overview but also help us to gain more insight into the development of post-COVID. With this knowledge we can further optimize our services and share current knowledge with (healthcare) professionals. Only with your permission will the results be coded (anonymously) used for future scientific research.
New participants
In 2025, we will also invite people who did not previously participate in the Multi-year Long COVID study. For example, because they only registered with C-support after the start of that study. Or because they registered because of long-term complaints after vaccination.
Data collection, consent and privacy
With the questionnaire, C-support collects data on post-COVID. Knowledge about the situation of people with post-COVID and its development over time is very valuable for better understanding post-COVID. This gives us better insight into the course of post-COVID and the specific needs during the disease process. Based on this, we can further optimize the quality of our services and share knowledge with other (healthcare) professionals.
C-support would also like to store the collected data (anonymized) for future scientific research into post-COVID. Research can lead to better diagnosis and contribute to the development of new treatments. Participants must give separate permission for the registration of data for research.
Declarations of consent
Do you only want to give permission for the processing of your results for the personal overview (PO)?
Then this applies to you Declaration of Consent 2. PO.
Would you also like your data to be used anonymously (encoded) for scientific research?
Then this applies to you Declaration of Consent 1. PO and future scientific research.
Below you will find both consent statements and a document about privacy and processing of your data.
Personal overview
After completing the questionnaire, you send it via a secure environment. Your data will be processed into a personal overview in which you will see a clear and concise summary of your personal results. If you continue to participate every year, you can use the personal overview to see the course of your disease.
Use the personal overview in conversations with healthcare providers, employer or company doctor. Or with family, friends or colleagues. This is very pleasant because not everyone is sufficiently familiar with the nature and impact of post-COVID on your life. The personal overview makes this clear.
The video below explains how to read and interpret the results and what you can use the personal overview for. NB the personal overview you will receive is not exactly the same as the overview in the video.
Explanation of personal overview
Development personal overview
The personal overview from the video has been improved on a few points. The graphs with the so-called 'spider webs', which were used in 'Complaints after exertion' and 'Quality of life', have been replaced by graphs that are easier to read. The assessment of the care provider has also been removed from the overview to prevent awkward situations during conversations with your care providers.
The development of your situation can also be seen. You see different sizes of dots. The largest dot shows the results of this year. If you participated twice, you will see two sizes of dots, if you participated three times, you will see three sizes. The smaller the dot, the longer ago.
Where can you find the personal overview?
The personal overview is only for you. That is why you receive it via Solvio, the electronic patient file that you have with C-support. You will receive a message a few weeks after you have completed the questionnaire, that your overview is ready in Solvio.
How to find your personal overview in Solvio:
- Log in to Solvio
- Go to 'my files'
- Click on your name in the gray bar (doesn't look 'clickable' but it is).
- Go to 'Documents and attachments'
- Download the file 'personal overview'
Besides yourself, only your aftercare advisor can access your personal overview.
How can I print my personal overview?
- At 'print' -> destination choose 'Save as PDF'
- Save the document to your computer to print it from there
- Please note: remember/note where the file is saved on your computer so you can find the document again to print.
NB use a laptop or PC!
Average personal overview
For participants it is interesting to be able to compare their own results with an average result. However, the average post-COVID patient does not exist, the differences between them are too great. It is possible to compare your own results with a reference group, a group of patients that you match in terms of age and gender. Based on the results, the research team annually creates the average personal overviews of different groups of patients.
Frequently Asked Questions about the Personal Overview Questionnaire
As a participant in the Multi-year Long COVID study, you will receive a copy one year after completing the 2e questionnaire an invitation for the new questionnaire. If you participated in March last year, it will take more than a year. The first invitations for the questionnaire will be sent out at the end of April.
After completing the questionnaire, it will take several weeks before the personal overview is in Solvio. At the moment, we are renewing the personal overview. When it is ready and in Solvio, you will receive a message about this.
The questionnaire data will be used for:
- compiling your personal overview;
- compiling average personal overviews and summaries for interested parties;
- optimizing C-support services and sharing knowledge;
- conducting scientific research in collaboration with other parties. For this we ask you for permission separately.
