First results of research by C-support and Erasmus MC announced
Patients who have registered with C-support for support with long-term complaints after a corona infection (called Long COVID or Post COVID) were able to participate in a study conducted by the Erasmus MC in the period from February to May 2022. Of the 11.548 invited patients, 6.764 completed the extensive questionnaire on the themes: health (complaints), care (use and appreciation), social roles and work. On average, patients have 18 complaints and consult 7 care providers, who do not sufficiently coordinate the treatments. The impact of Long COVID on their lives is enormous: 3 out of 4 patients do not work or work less.
Health: complaints and quality of life
Long COVID patients have many different health complaints. Fatigue, loss of condition, concentration problems, difficulty with stimuli and memory problems predominate. Almost all patients are severely fatigued and have complaints after exertion. Furthermore, we see a great diversity and severity of complaints, which means that you cannot speak of one uniform clinical picture; no patient is the same. Only 19% of people who were infected at least a year ago indicate that they have largely or completely recovered. The severity of the complaints decreases only slightly over time and the complaints have a great impact on the quality of life. Patients rate this with a 5,7, while the Dutch population gives an average of 8,9.
Many healthcare providers but little coordination
Patients visit an average of 7 healthcare providers. The GP, physiotherapist, company doctor and occupational therapist are the most frequently visited. The recovery care scheme has contributed to the high number of visits to paramedics, with the physiotherapist and occupational therapist standing head and shoulders above the other healthcare providers, both in terms of the number of visits and satisfaction. Only 25% of patients say they received care in the first month, after 7 months this applies to half of the patients. Three out of four patients indicate that healthcare providers do not coordinate the treatment with each other. 91% arrange the necessary care themselves, while the majority indicate that in addition to the help from C-support, they would also like support from the GP in particular.
Social roles
The fact that patients' lives have been turned upside down is evident from the extent to which they are able to continue their daily lives. Patients indicate that they have an energy level of 48%. As a result, people are much less able to fulfil their roles in daily life, such as social contacts, hobbies, housework and sports. Of the people who worked, 31% can no longer work and 46% have reduced their working hours, with an average of 50% less work.
“The research gives much food for thought. We will work with all parties in the field must put our shoulders to the wheel to improve patient care. Multidisciplinary collaboration must become the credo, whereby doctors and healthcare providers look beyond the boundaries of their own field. Training of healthcare providers is extremely important. C-support is already fully involved in this busy. Last year we trained 35.000 healthcare providers. More knowledge about the size but especially the nature of the disease is enormously important. We strongly advocate for more research into the causes and treatment", according to Annemieke de Groot, director of C-support.
Continuation
In the coming months, Erasmus MC and C-support will discuss the results with patients, healthcare providers and other experts. The research report will be delivered in October and the second round of the research will start in February 2023.
Webinar June 30
The results were presented during a webinar for patients and other interested parties on June 30. At the table, research leader Suzanne Polinder of the Erasmus MC, Bianca den Toom Long COVID patient and experts from C-support discussed the results. By means of video contributions we saw short reactions to the results from patient organization PostCovid NL, the patient group Long COVID Netherlands and the Center for Work Health. This webinar, the presentation, public summary and videos about sitting research can be found via the pink button below on a special page about this research.
