Minister impressed by major and long-term impact
Erasmus MC, in collaboration with C-support, has published a report on two years of research into post-COVID. The research among 7.750 people registered with C-support shows that the consequences for patients are significant, both for their health and for the impact on their lives. The majority have not recovered after two years and are struggling with many different, often serious health complaints. They have reduced their working hours or stopped working altogether and are unable or less able to fulfil their social roles. The differences between patients are significant; a quarter indicate that they have now recovered and have been able to resume normal life to a greater or lesser extent. The research looked extensively at factors that can explain differences between patients. Minister Agema received the report during a working visit to C-support and Q-support today.
C-support, with its knowledge of Q fever, saw early on the importance of mapping and monitoring the long-term consequences of post-COVID. That is why it commissioned Erasmus MC in 2021 to conduct this study among patients who registered with C-support. These are people who experience health complaints months to years after the COVID-19 infection, sometimes very serious, with major consequences for the quality of life, daily functioning and work.
Results
Post-COVID has a significant and long-lasting impact on physical and mental health. In this two-year study, a large proportion of participants have still not recovered after the second measurement and the quality of life is low on average. Recovery varies over time with large differences between patients. For example, there are also participants who are now doing well or better. On average, some outcomes show slight improvement over time, while other outcomes hardly change. Age, factors in the disease process after infection with COVID-19 and education level play a role in whether or not the degree of recovery and quality of life improve.
The pattern of complaints of post-COVID patients varies, but fatigue and cognitive problems are experienced by almost all participants. Post-exertional malaise (PEM) occurs in 84%. After two years, participants report an average of 16 health complaints that are often experienced as moderate to severe. The health situation leads to a lot of healthcare use. Demographic and medical characteristics of post-COVID patients play a role in the number of healthcare providers they have consulted. Many patients resort to treatments for which there is no scientific evidence yet for the effectiveness against post-COVID.
Post-COVID causes significant limitations in daily functioning. The consequences of post-COVID are clearly visible on work and education. The percentage of people with paid work has dropped from 95% before the infection to 71% after two years. The average number of working hours has dropped from 31 to 18 hours and 69% of students have suffered study delays. Post-COVID also has major consequences for the financial situation and the ability to participate in social life, family and society. A large proportion of patients need help from others. The lack of recognition and finding the right support and care is a burden for patients that they have to bear in addition to their post-COVID complaints.
“The research shows that the consequences of the COVID-19 pandemic are not yet apparent to many
are over. Tens of thousands of people suffer from often disabling complaints that affect their
seriously disrupt their lives and those of their loved ones. Their situation requires further research
so that ultimately better care can be provided. I think it is important that we recognize and acknowledge post-COVID so that people feel understood and know that there is cooperation on many fronts to improve their situation and that of people with other post-infectious conditions in the long term.” – Fleur Agema, Minister of Health, Welfare and Sport
Recommendations
The report contains several recommendations for society, care and support for post-COVID patients and follow-up research into post-COVID. Erasmus MC and C-support believe it is important that both research and care and support look beyond medical aspects. Zooming in on specific (sub)groups and broadening to other post-infectious conditions is also of great importance.
“The research shows that post-COVID has major consequences for the patient, his immediate environment and society. It is important to look not only at the health aspects in research, but also at the impact of health complaints on work, study, social life and healthcare use.” – Stella Heemskerk, researcher at Erasmus MC.
Continuation
The collected data on C-support's patient population has proven to be very valuable in gaining more insight into the extent and nature of the various problems that patients experience. C-support shares these insights in the form of this scientific report and an easy-to-read public summary to jointly improve care for post-COVID patients.
