Results Long COVID research

The results were presented on June 30 during a webinar for patients and other interested parties. 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.

People 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 the 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.

Health: complaints and quality of life

People with Long COVID (now also called Post Covid) 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; this is rated 5,7, while the Dutch population gives an average of 8,9.

Care: many care 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 and work

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.

Necessary next steps

The results of the research and the experience that C-support has gained since October 2000 in supporting Long COVID patients, make it clear that much needs to be done to improve care.

“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”

Annemieke de Groot, director of C-support.

The necessary next steps in brief:

Research

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.