Commissioned by C-support, Erasmus MC is launching a large-scale study into the nature and impact of Long COVID on patients and society. Some people who become infected with COVID-19 have persistent health complaints. The impact of this is significant. The disease not only affects physical and mental health, but also social participation and work. Long COVID patients have to deal with different healthcare providers, disciplines and domains. Better insight into the nature and impact of Long COVID and the care provided makes it possible to improve and better coordinate care and support for patients. The almost 10.000 patients who have registered with C-support with persistent complaints after infection with COVID-19 can participate in the study. With this study, C-support wants to gain better and long-term insight into the consequences of the complaints and the care needs of the patients. 

Long COVID patients experience symptoms such as fatigue, shortness of breath, reduced concentration and memory and loss of smell and taste for a long time after infection with COVID-19. It is becoming increasingly clear that these persistent symptoms have a major impact on quality of life, physical and mental health and on social and labor participation. For example, some of these people have not yet or only partially returned to work after months and their social life has largely come to a standstill.

In their search for the right care and support, Long COVID patients have to deal with various healthcare providers, both medical and paramedical. In addition to healthcare providers, they have to deal with a wide range of institutions in the social and employment domain. C-support reports that both healthcare providers and institutions are still insufficiently familiar with the long-term consequences of COVID-19. As a result, patients experience problems in obtaining the right care and support. More insight is needed into bottlenecks, gaps and opportunities to improve tailor-made care for COVID-19 patients in the short and long term.

Multi-year research

C-support was established on behalf of the Ministry of Health, Welfare and Sport for the aftercare of COVID-19 patients who experience long-term complaints as a result of a corona infection. Since the start in October 2020, almost 10.000 patients have already reported. This large number of patients is ideally suited for research. The approach of the Erasmus MC research is important to gain more insight into the effects of Long COVID on the medical, social and work domains, but also in healthcare use and satisfaction with the care provided. C-support is now initiating this research because of the lessons previously learned from the Q fever epidemic. By starting research in a timely manner and repeating this for several years, you create the opportunity to monitor the development of patients from the outset and over a longer period. Something that has not previously happened with Q fever, also a post-infectious disease.

Results of the research

By mapping the consequences of Long COVID patients registered with C-support, valuable insights are obtained that can contribute to effective treatment and better integrated support.

Patients who participate in the study will receive a detailed picture of the nature and extent of their own complaints. They will receive an overview of the personal results of the questionnaire, which they can use to enter into discussions with healthcare providers. Because the study is repeated more often, patients will see how their complaints develop and how their complaints relate to the C-support patient population.

Research design and initiation

The study consists of an extensive questionnaire for patients that they can complete in approximately 30 minutes. Interim saving and pausing is possible. The questionnaires are processed anonymously by Erasmus MC to arrive at a complete picture of the long-term effects and care needs of the patient population. Patients who are registered with C-support will receive an invitation to complete the questionnaire from 11 February.