Patient follow-up
Author: Julia Dobke, Editor: Maria Yiallouros, English Translation: Dr. med. Gesche Riabowol (geb. Tallen), Last modification: 2026/01/09 https://kinderkrebsinfo.de/doi/e217480
Table of contents
Patients are strongly advised to attend the scheduled follow-up appointments in the outpatient clinic after their discharge. In the first few weeks, they should also stay as close as possible to the treatment centre in order to be able to reach it quickly (within two hours) in case of an emergency.
Monitoring of blood values
At the beginning of the follow-up phase, the blood values (blood count, immune status, infection parameters) are checked and, if blood values deviate from the norm, appropriate measures are taken as follows:
- Red blood cells: If the red blood cells (erythrocytes) are low, they can be replaced by a blood transfusion.
- Immunoglobulins: If the immunoglobulins are too low due to the lack of B lymphocytes (B cells), these can also be replaced. If patients develop long-lasting B-cell aplasia, they should not receive vaccinations because these would have no effect when no B cells are around. Therefore, patients have a high risk of contracting viral and bacterial infections, against which healthy children and adolescents can be vaccinated.
Monitoring of neurological side effects
The acute toxic effect on the nervous system (neurotoxicity), with clinical symptoms such as confusion, speech disorders (aphasia), seizures and cerebral edema, is a known, serious side effect of CAR T-cell therapy (see chapter "Side effects").
According to current knowledge, however, acute neurotoxicity regresses completely in most patients. Sufficient data on the long-term effects of these neurological toxicities are not yet available (see EBMT register below). Therefore, all patients who have developed immune effector cell-associated neurotoxicity syndrome (ICAN) after CAR T-cell therapy should be followed carefully by means of regular anamnesis and neurological examination. Also, in case of cognitive impairment, such as reduced attention span, concentration problems and memory loss, certain tests are recommended for further assessment and management.
Monitoring of disease status
In patients with acute lymphoblastic B cell-leukaemia (or lymphoma), bone marrow punctures are performed regularly to monitor the response to CAR T-cell therapy.
Monitoring of long-term side effects
In order to be able to learn about the long-term side effects of CAR T-cell therapies in the future, a registry of the "European Society for Blood and Marrow Transplantation" (EBMT) collects all relevant data on the long-term effects in Europe (see EBMT registry).