Results of the research year 1
On June 30, 2022, the first results of year 1 of the Long COVID study were presented. In November 2022, the research report of year 1 delivered. You can find all the information via the link below.
On this page:
More insight into long-term complaints and care provided
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 in the research
Everyone who was registered with C-support for advice and support before January 2023 received an invitation to participate in this study. 11.000 people took advantage of this. If you participated in year 1, 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 year 2 in August of this year.
Completing the questionnaire takes about 30 minutes. That is quite long, but you can save your answers in the meantime and continue later. This way you can spread your energy over the day or several days. The questionnaire has been compiled with great care. Patients also contributed to this.
On February 7, there was a webinar about this research. It discusses the importance of the research, both for patients and for healthcare providers. And explains step by step how you can participate in the research and what it will bring you. Want to know more? Watch the webinar again at your leisure.
Webinar at the start of the research (February 2022)
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 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 is made.
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.
Explanation of personal overview
NB 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.
Updated personal overview year 1
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 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?
- At 'print' -> destination choose 'Save as PDF'
- Save document to hard drive or external drive to print 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
Average personal overviews have been made of the entire study population. These are divided by gender, age and the number of months after infection (up to 1 year, up to 2 years and longer than 2 years). You can compare your own results with the group you fit into.
Example average personal overview:
Results of the research year 1
The completed questionnaires of all participants are sent anonymously to Erasmus MC. The researchers process the data of all these questionnaires. This provides insight into the nature and complaints of all participants in the study. And into the care provided and the quality of the care provided.
On June 30, 2022, the first results of year 1 of this research were presented during a webinar.
In November it is research report of year 1 delivered.
