In February 2022, the Multi-year Long COVID study was started, which Erasmus MC is conducting together with C-support among people who have registered with us for support for long-term complaints after corona. Ultimately, more than 11.000 people completed the first questionnaire. This group will receive from mid-February the second questionnaire. After sending in, they will receive a new personal overview in which their results are compared with those of the first questionnaire.
For the research it is very valuable if the participants who completed the first questionnaire also complete the second questionnaire. Even if they have (largely) recovered from Long COVID. This provides insight into the course of Long COVID that is important for healthcare, follow-up research and optimizing the services of C-support.
For the participants
Not everyone will receive the second questionnaire at the same time. This depends on when you submitted the first questionnaire. You will receive the second questionnaire exactly one year after you submitted questionnaire 1. The majority of participants submitted questionnaire 1 between mid-February and mid-March 2022. In the months that followed, new patients were given the opportunity to participate in the study. They received an invitation shortly after registering with C-support. The last invitations were sent in January 2023. These people have now completed the questionnaire and can also participate in year 2 of the study. They will therefore receive early 2024 only the second questionnaire; exactly one year after the first questionnaire was submitted.
If you never completed the first questionnaire, it is unfortunately no longer possible to participate in this study.
Preparations year 2
The project team has been preparing the questionnaire for year 2 of the study since October. They are taking stock of all feedback received on the first questionnaire. These are, for example, the comments that participants have placed in the open fields. Or the comments and questions that have been received by email or via the aftercare advisor.
Focus groups were organised in November. These are groups of patients who discussed the results of the study in year 1 and important topics for the study in year 2 with several members of the project team. Patient organisation PostCovid NL and patient group Long COVID Nederland also provided feedback on the first questionnaire and helped think about the questionnaire for year 2 of the study. Naturally, the aftercare and medical advisors of C-support also provided feedback.
All feedback has led to adjustments of several questions. The feedback has also led to new components that are addressed in the second questionnaire:
- deepening of the health component;
- handling complaints;
- recognition of Long COVID and the impact of the complaints;
- consequences of Long COVID on the financial situation.
The project team
Several people are working on the research. From Erasmus MC, these are research leader Suzanne Polinder, who has been replaced by Stella Heemskerk, Postdoc Public Health, since December last year due to a long absence. In addition to Stella, junior researcher Iris Brus is also working on the research. Together, they are responsible for the research design, literature study, questionnaire and analysis of the results. They also work together on scientific publications about this research.
Several people from C-support are involved. Peter Tieleman, data analyst and researcher, contributes to the questionnaire and analyses and develops many of the graphs, for example those you see in your personal overview. He is responsible for the programming and the technology required for the questionnaire. He is assisted by Mandy Turgut, junior data analyst. Medical advisors Alfons Olde Loohuis and Sara Biere-Rafi are responsible for the medical side of the research and the coordination with other ongoing research into Long COVID. Aftercare advisors Peggy van Oijen and Idelette Sleurink provide input from aftercare. Nelleke Maathuis, patient participation advisor, takes care of the focus groups and further input from patients and Renske Bartels, communications advisor, takes care of the communication about the research. The team is led by Lieke Sweerts, who has been appointed as project leader since September last year.
From left to right and front to back: Peter Tieleman, Alfons Olde Loohuis, Sara Biere-Rafi, Stella Heemskerk, Iris Brus, Nelleke Maathuis, Mandy Turgut, Lieke Sweerts, Renske Bartels, Peggy van Oijen, Suzanne Polinder and Idelette Sleurink.
Importance of the research
The results of the study provide insight into the extent and course of the complaints and the impact of the complaints on daily life. This contributes to a better understanding of Long COVID. With the data from this study, various initiatives are taken for more (biomedical) research. The study also provides input for improving care and support for patients. Not only is better care needed, patients also need more support in the areas of work, study and loss of income.
The study provides participants with insight into their own disease progression via the personal overview. After completing the second questionnaire, a new personal overview follows, in which patients can compare the results of both years. The personal overview also helps to discuss their situation with care and care providers, but also with the employer, colleagues and the patient's immediate environment. This leads to more understanding and recognition of their disease.
