The patient registry has released new data. Initial analyses show that MS is not a risk factor.
Exactly 1,918 patients with multiple sclerosis (MS) who have also contracted coronavirus are being closely monitored by doctors in the ReMuS Multiple Sclerosis Patient Registry. Since March last year, they have been investigating the symptoms, treatment and possible impact of coronavirus on this specific group of people. Initial analyses show that MS is not a risk factor, but patients who are older, have more severe neurological impairment, are obese and also have some type of chronic therapy are at higher risk.
Since the beginning of the year, the registry has also been collecting data on patient vaccinations and possible adverse reactions. "Because our patients are chronic, they are prioritized for vaccination against covid-19 disease.We are already tracking hundreds of patients who have received the vaccine in the registry, and we expect thousands more by summer. We are monitoring them before and after vaccination, including any side effects. We can compare their health with previous years to assess the impact of covid-19 and the vaccine on our patients. So far, we have no indications that MS patients tolerate the vaccine worse than the healthy population," describes neurologist doc. MUDr. Dana Horáková, Ph.D.
The usefulness of this project was confirmed in the first months of monitoring - according to doc. Horáková was able to identify those patients who are at risk of a more severe course of infection. "Once a person reports positive, we then very quickly arrange for an infusion of medication to protect against a more severe course of covid," continues the doctor. According to neurologist Prof. Eva Kubala Havrdová, M.D., CSc., in March last year, when the pandemic started, patients with MS were afraid of being infected, and the number of visitors to the centres dropped by about a third. "Since the autumn, we are not afraid anymore and we are going full speed. Unfortunately, we see that many people have stopped following the anti-epidemic measures completely, especially in families, where most of the infections come from." comments Prof. Kubala Havrdová, adding that due to the unpredictable course of the covida, even a stable patient with MS may end up in the ICU.
In addition, it points to the very poor availability of psychotherapy for MS patients. "Twice as many psychotherapists would be needed as there are now. They should be part of every specialist centre and paid for by the health insurance. Unfortunately, the current state of affairs does not even come close to this, even though MS is linked to depression. The immune system, which causes inflammation in the brain, blocks the serotonin pathways that affect mental well-being. We know from studies that depression is one of the flags heralding the outbreak of disease," says Prof. Havrd. The psychotherapist helps patients with a chronic incurable illness to cope and set new life goals.
"The advantage is when the psychotherapist knows the disease and is part of the team that cares for MS patients. Patients who take active care of their souls right from the beginning of the disease are in better condition in the long run than those who do not. When we switched to online consultations because of the covid, it became clear that there were indeed many people in need. Mothers with MS on maternity leave or patients who live far away and would not have been able to get to us in a "normal" situation started to come forward." describes Renata Malinová, a psychotherapist who works with patients.
The ReMuS registry has been mapping MS patients for the eighth year and currently has over 17,485 patients. The founder of the registry, the IMPULS Foundation, traditionally publishes the latest data on the occasion of World Multiple Sclerosis Day (30 May). "The registry is currently the only long-term source of information on MS in the Czech Republic, and all fifteen highly specialised care centres where MS patients are treated contribute to it. It helps us to map the disease as such, thanks to which we can assess not only the effectiveness of the drugs administered, but also their safety, and track demographic and clinical data from real practice over time. You won't find such comprehensive information anywhere else. Registry data also serves as an argument for health insurance companies to pay for care," says the project director of the ReMuS registry, Mgr. Jana Vojáčková, MBA.
According to the most recent data, 71.6 % are women and 28.4 % are men. Most patients are treated between the ages of 40-50. The average age at the time of disease onset is 31.5 years. More than half of the patients under 65 work full-time (61.8 %), and another 16.7 % patients work part-time. Patients on the register had 167 babies last year. There are an estimated 22,000 patients nationwide. Some of the patients are thus "outside the system".
That is why the IMPULS Foundation launched the Multiple Sclerosis Together project in April, when in cooperation with regional patient organizations Roska will try to "catch" those who are already in the so-called secondary progression of the disease. "With this project, we are entering the third phase of the ReMuS registry and we should reach another 800-1,300 patients. While maintaining privacy, we will also monitor their psychological state, which is important in this disease and not only at the present time. The aim is to learn as much as possible about the disease itself," explains Jana Vojáčková.
The initiators would like to repeat this project after 3-5 years. ReMuS is one of the top international comparisons, its data help in research projects dealing with, among others, elderly patients in advanced progressive phase of the disease, where doctors, according to Assoc. Horáková, unfortunately, does not yet have an effective treatment available. The main focus here is on symptom treatment, rehabilitation and the provision of quality aids. According to doctors, there are 4-8 thousand people in the Czech Republic in the advanced stage of the disease who are still waiting for a breakthrough treatment. "The only strategy that helps us fight the disease is to quickly deploy an effective drug and escalate the treatment if it doesn't have an effect, in order to delay the progression of the disease - something that health insurance companies don't always allow us to do financially," adds Prof. Havrdová.