Multi-year Long COVID study

Persistent complaints after a corona infection (COVID-19) can have a major impact on quality of life, physical and mental health, social life and work. Some people have not yet or only partially returned to work after months. Their social life has virtually come to a standstill. We also see that people have to deal with many different healthcare providers and institutions. It is important to know what care and support is provided and how satisfied people are with it. Better insight into the nature, course and impact of Long COVID and the care provided makes it possible to improve the care and support for patients.

The research reveals the following:

• The nature, degree, duration and course of the complaints (physical, mental and cognitive).
• The influence of the complaints on social participation and work.
• The care and support received.
• The healthcare providers and agencies involved.
• Satisfaction with the care and support received.

Participation consists of completing a digital questionnaire. Everyone who was registered with C-support before January 2022 received an invitation to participate in this study. 11.000 people took advantage of this. If you completed the first questionnaire, you will automatically receive a link to the questionnaire for year 2 exactly one year later. For example, if you participated in August last year, you will receive the invitation for the second questionnaire in August of this year. The last invitations for year 2 were sent in February 2024.

Questionnaire year 2

The questions are largely the same as those from last year. In consultation with patients and based on new insights, changes have also been made, such as an in-depth section on health, recognition of the disease and the financial consequences of Long COVID. Some sections are optional; you choose whether to answer them. In order to keep the questionnaire short, certain data from last year is automatically filled in for you. In this way, we try not to make the burden too great for you.

Completing the questionnaire takes about 30 minutes. The questionnaire has been compiled with great care, and patients have also contributed to it.

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 very clear summary of your personal results. If you continue to participate in the study every year, you can use the personal overview to see the course of your disease. You can also compare your results with a group of patients comparable to you, of which a average personal overview has been created. These average overviews are also compiled anew each year.

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 yet familiar with the nature and impact of Long 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.

The personal overview has been improved in a few areas. The graphs with the so-called 'spider webs', which were used for '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.

Because the second questionnaire has changed compared to the first questionnaire, the personal overview has also changed. The main difference is that in year 2 a comparison is made with year 1. The large dot shows the score of questionnaire 2, the small dot that of questionnaire 1. Below you see images of the personal overview year 1 and year 2.

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 half an hour after you have completed the questionnaire that your overview is ready in Solvio.

How to find your personal overview in Solvio:

1. Log in to Solvio
2. Go to 'my files'
3. Click on your name in the gray bar (doesn't look 'clickable' but it is).
4. Go to 'Documents and attachments'
5. Download the file 'personal overview'

Besides yourself, only your aftercare advisor can access your personal overview.

How can I print my personal overview?

1. At 'print' -> destination choose 'Save as PDF'
2. Save document to hard drive or external drive to print from there
3. 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!

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 has compiled the average personal overviews of six different groups of patients.

Average personal overviews by age and gender: