Post-COVID patient has an average of 15 complaints and has not recovered after 2,5 years
Many post-COVID patients have not or only partially recovered in the past year. In almost half of them, the recovery is unchanged. The differences between patients are large, but the erratic nature of the complaints is recognizable to everyone. On average, patients have 15 health complaints that have a major impact on their lives and on society. For example, the percentage with paid work has fallen from 95% to 68% and 41% of working people have started working an average of 15 hours less per week. They also give less substance to the social roles in daily life. Despite persistent complaints, patients receive less regular care. Many resort to alternative treatments whose effectiveness for post-COVID has not yet been scientifically proven. This is evident from year 2 of the Long COVID study that Erasmus MC is conducting together with C-support among post-COVID patients who have registered with C-support.
The study will continue until February next year, but the first results are now being presented. The study maps the development of health complaints, their impact on daily life and the care people receive. The aim is to increase insight into the disease and improve post-COVID care. Urgent, because many tens of thousands of people suffer from this disease and the social consequences are very great according to the Social Impact Team (MIT).
Many health complaints and low quality of life
Post-COVID patients have an average of 15 different health complaints. Fatigue, problems with stimulus processing and concentration problems are the most common. The severity of these complaints decreases slightly up to 6 months after infection, after which they remain stable. 82% of patients have complaints after physical or mental exertion (PEM) and 85% have sleep problems. Compared to research year 1, the results have improved slightly on average, but the differences between patients are large.
Impact on daily life is great
That post-COVID completely disrupts the lives of patients is evident from the extent to which they are able to continue working and fulfilling their social roles (social contacts, hobbies, housework, sports, etc.). 95% had paid work before the infection, now only 68% have paid work. Of the working population, 18% are completely sick at home and 41% have reduced their working hours by an average of 15 hours per week. 73% indicate that their financial situation has deteriorated and many are concerned about this.
Care: little regular care, many health complaints
Patients have seen an average of 4 healthcare providers in the past year, which is considerably less than the 7 in the previous year. 86% have received care in the past year and 46% are no longer receiving care, while they still have complaints. They give the care an average of 6, but individual healthcare providers, such as the occupational therapist or physiotherapist, are rated higher.
There is no scientifically proven treatment for post-COVID. However, 66% indicate that they have followed alternative treatments or used medication in the past year. 63% indicate that they incur costs as a result that are not reimbursed by health insurance.
Annemieke de Groot, director of C-support and Q-support: “For post-COVID patients with a complex clinical picture is not sufficiently regulated in regular hospitals for diagnosis and research. Even though there is still little 'evidence', we can do what is necessary to demonstrate or exclude certain things. Therefore, let the regular hospitals establish connections with the academic hospitals that are conducting research. We call on the health insurers to cooperate in this."
Attention to post-infectious diseases
In the case of a new and complex disease, it is important to follow patients from the start to gain insight into the development of their complaints. This was lacking in Q fever, which is why we started this study among post-COVID patients last year. C-support shares the results with the government, (care) professionals and organisations such as LAN, Longfonds, health insurers, patient organisations, UWV and, for example, Centrum Werk Gezondheid. This leads to improving post-COVID care, such as setting up an expertise network or centre, but also to informative tools in the field of work and post-COVID.
Annemieke de Groot, director of C-support and Q-support: “We share the results with researchers because more research into post-COVID is of great importance. Both biomedical research and 'social' research that mainly shows the impact of this disease. We also continuously make connections with other studies, not only into post-COVID but also into post-infectious diseases such as Lyme disease, ME/CFS and of course Q fever. Last week we presented the results of the QVS database, a four-year study among patients with Q fever fatigue syndrome. This shows that after an average of 13 years, these health complaints still completely disrupt people's lives.”
Presentation of results via C-support website
Researchers Iris Brus and Stella Heemskerk of the Erasmus MC present the results in a number of videos and explain them. Annemieke de Groot (Director), Alfons Olde Loohuis (Medical advisor) and Pauline van Dijk (Aftercare advisor) respond to the results, as do the patient organization PostCovid NL and the patient group Long COVID Nederland.