A few months after the outbreak of the corona pandemic, it turned out that the recovery of some patients took longer and that they were struggling with symptoms that no one could explain. They complained of abnormal, excessive tiredness, which did not go away even after rest. Athletes were inhibited by shortness of breath. Others suffered from so-called brain fog and experienced memory and concentration problems. The patients gathered on social media. In Belgium, the Ligue des Usagers des Services de Santé requested a study on the needs and follow-up of people suffering from long-term COVID-19 at the KCE.
Any kind of COVID-19
Based on international scientific literature, the Knowledge Center estimates that one in seven people still have symptoms six months after being infected with the coronavirus. «The figures are significantly higher in patients who were hospitalized during the acute phase,» states the KCE. Higher numbers are reported during the first three months after infection, showing that a proportion of patients with long-term COVID-19 are recovering. “Long-term COVID-19 affects both people who have had a severe form of COVID-19 and people who have only had a mild (or possibly even asymptomatic) form,” the analysis shows.
Some symptoms are said to be the result of organ damage from the original viral infection. Other symptoms are said to be due to the body’s abnormal responses — such as immune and inflammatory responses — to the infection. A third type of symptoms would be an exacerbation of pre-existing illnesses – such as diabetes and heart problems – after the infection or hospitalization. «These three types of symptoms can occur in combination, and explain the major differences in how this condition manifests itself clinically,» states the KCE.
Decrease in quality of life
In February, the Knowledge Center conducted an online survey among 1,320 people with long-term COVID-19 and interviewed about a hundred participants. This showed that the patients experience the symptoms very differently, from limited to life-changing. “In general, prolonged COVID-19 leads to a marked reduction in quality of life, some loss of autonomy and difficulties in returning to work. The psychological consequences are serious,” says the KCE. Patients are anxious about how long the symptoms will last and how to deal with disbelief and stigma in their environment.
In addition, a third of patients reported a lack of information, skilled staff or access to care. “Patients report that they often feel lost in our health care system and that there is a lack of a global approach to their problems,” according to the Knowledge Center. That is why the KCE sees the benefit of a global functional assessment, a bilan, which is drawn up in specialized centers and refers patients to tailor-made treatments in primary care.
Care that may be useful in the treatment of long-term COVID-19 is largely reimbursed, but not all reimbursement options are known. It is also still unclear which treatments are effective in long-term COVID-19. In the meantime, the Knowledge Center therefore proposes to provide a temporary reimbursement and to draw up a substantive protocol for the care of long-term COVID-19. The KCE will also support clinical studies into possible treatments for long-term COVID-19.