Personal overview and data collection

Participants in the two-year Long COVID study and the four-year QVS database study received an annual invitation to complete a questionnaire. Based on their answers, a personal overview was created for them. This provided them with insight into the progression of their symptoms, the impact thereof on their lives, and their healthcare utilization. Participants in the Long COVID study received a for two consecutive years shortened questionnaire for the personal overview.

This year, C- and Q-support are offering previous participants and other patients the opportunity to receive a personal overview. To this end, a revised and shortened questionnaire has been developed. Depending on your personal situation, completing it takes 20-30 minutes. The results are used to create a personal overview but also help to gain more insight into the progression of the various long-term conditions. With this knowledge, we can further optimize the care and support for these patients and share current knowledge with healthcare professionals. Only with your permission will the results be used in coded (anonymous) form for future scientific research.

Participants

In 2026, patients registered with C- and Q-support will receive an invitation to the questionnaire.

This concerns patients with:

• Post-COVID
• Long-term complaints after COVID-19 vaccination
• Q fever fatigue syndrome (QFS)
• Chronic Q fever

Conditions for participation:

• Open file
• 16 years or older*
• Living in the Netherlands

The questions have been developed for adults and are therefore not suitable for children and young people under the age of 16. Because C- and Q-support are ceasing operations, there is unfortunately no longer an option to create a questionnaire for children and young people.

With the questionnaire, C- and Q-support collect data on long-term conditions (post-COVID, complaints after COVID-19 vaccination, Q fever fatigue syndrome (QFS), and chronic Q fever). Knowledge about the situation of people with long-term conditions is very valuable for better understanding these conditions. This provides us with better insight into the course of these conditions and the specific needs during the disease process. Based on this, we can further optimize care and support and share this knowledge with other (healthcare) professionals.

C- and Q-support make the collected data (anonymized) available for future scientific research. Research can lead to better diagnoses and contribute to the development of new treatments. Participants must give separate consent for the registration of data for research.

Declarations of consent

1. Would you like to consent to the processing of your results for the Personal Overview (PO) and consent to your data being used anonymously (coded) for future scientific research?
   Then this applies to you Consent Form 1 
2. Do you only want to give permission for the processing of your results for the personal overview (PO)?
   Then this applies to you Consent Form 2

Below you will find both consent statements and a document about privacy and processing of your data.

After completing the questionnaire, your answers will be sent via a secure environment. Your data will be processed into a personal overview in which you see a clear and concise summary of your personal results.

You can use the personal overview during conversations with healthcare providers, your employer, or the company doctor. Or during conversations with family, friends, or colleagues. This is helpful because not everyone is sufficiently familiar with the nature and impact of your condition on your life. The personal overview provides insight into this.

The personal overview is for you only. Therefore, you will receive it via Solvio, the electronic patient record system you have with C- or Q-support. You will receive a message within an hour of completing 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 people who have access to your file can view your personal overview.

How can I print my personal overview?

1. At 'print' -> destination choose 'Save as PDF'
2. Save the document to your computer to print it 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 outcome. However, the average patient with your condition does not exist, as the individual differences are too great. It is possible, however, to compare your own results with a reference group—a group of patients to which you belong in terms of age and gender. Based on the results, the project team will compile average personal overviews of various patient groups in the autumn.