Recovery often fails to materialize for people with severe lung covid complaints. That is the main conclusion of the interim results of a study into the new disease by Erasmus MC in collaboration with aftercare organization C-support. Nearly 4,500 people completed a questionnaire for the second time, which showed that the situation for almost half of them was unchanged compared to a year earlier. The research has now been running for two years and will continue until at least February next year.
“The majority of people make little or no progress,” says researcher at Erasmus MC Stella Heemskerk. “We see that many people get stuck in the search for care: they stated that they no longer receive care, but that they are still ill. One of the reasons for this is that they are out of treatment according to their doctor.” The most common complaints are severe fatigue, overstimulation and cognitive problems, such as forgetfulness and poor concentration.
A side note: the participants in the study are registered with C-support, an organization where people with lung covid can report for support. These are usually people with many and serious complaints. “The results apply less to the average lung covid patient, but to the group that is already suffering relatively more,” says Heemskerk. A total of 26,000 people are known to C-support. Exactly how many Dutch people suffer from lung covid is unclear. Estimates range from 600,000 to 900,000.
The impact on quality of life is huge, says Heemskerk. 85 percent say they have sleeping problems. On average, participants in the study give their quality of life a score of 5.8 on a scale of 10 – for the average Dutch person that is an 8.9. They give their general health a score of 52 out of 100, compared to 82 for the average Dutch person.
‘Strongly lonely’
This is partly due to loss of work; many people with severe lung covid complaints stopped working. 95 percent of the participants had paid work before the corona infection, now that is only 68 percent. And 41 percent of those have started working fewer hours: an average of fifteen hours less per week than before. 88 percent of the participants who were assessed for disability received a benefit. Social life also suffers from the complaints: 1 in 5 participants feels “very lonely”.
Read also: this story about not being able to work due to lung covid
The research shows how care for these patients can be improved, says Annemieke de Groot, director at C-support. Patients typically see many different healthcare providers. “The physiotherapist, the occupational therapist, the cardiologist, the internist, the neurologist. It is hopping back and forth between the general practitioner and the specialist. You would grant patients that they can go to one place where everything is bundled, for example an outpatient clinic. It really has to be more efficient.”
The results show “no common thread” between patients, says De Groot, which means that it still seems arbitrary whether or not someone has long-term complaints from a corona infection. “Some have an underlying condition, others don’t. Some got it after the first infection, others only after the third. Some are heavier or older, others fit, healthy and young.” It is true that relatively most people got lung covid in the first corona year. “At a later stage, when the vaccinations started, we see fewer people who became ill for a long time.”
A next step in the research is so-called subgroup analyses, says researcher Heemskerk. “We want to see if we can identify certain characteristics for subgroups.” The people who did recover or whose health at least improved slightly, for example. “What are the characteristics of the patients in that group? We want to look at age, gender, underlying conditions and quality of life, among other things. We need to collect as much knowledge as possible.”
A version of this article also appeared in the newspaper on June 29, 2023.