In 2021, 82,700 people were known to their GP with a concussion. 82% of them were under the age of 65. In most cases, people recover from a concussion within a few weeks. However, in 10 to 30 per cent of cases, people continue to suffer severe long-term symptoms. These persistent symptoms of concussion are mostly invisible to the patient's environment, and range from headaches, dizziness, nausea, (over)sensitivity to stimuli to problems with concentration and memory.
Hundreds of patients a year consider the costly US Cognitive FX treatment as a last resort. It costs up to €20,000 per treatment, and and is not reimbursed by health insurers due to a lack of scientific evidence on its effectiveness.
64 patients followed during treatment in Utah
The researchers followed 64 patients before, during and after treatment in Utah. The patients travelled to Utah on their own and paid for the treatment themselves. The patients completed questionnaires to indicate how they felt and performed various tests before and after treatment. The researchers also looked at whether there were differences between patients, and studied brain scans that were taken of the patients during treatment. Furthermore, they consulted the founders of the CFX treatment, a group of experts on concussions and a group of patients who underwent the CFX treatment. This gave them new insights into the main features of the treatment, how the treatment could potentially help people feel better, and the changes observed by patients.
After treatment, 69% of patients reported having fewer symptoms. They also reported less anxiety, depression, fatigue and sleep problems. The researchers saw improvements in tests for dizziness and in their cognitive performance. Six months after the treatments, the improvements were still there, and patients also reported higher levels of social participation. However, patients were not more active in school, study or work.
Rimke Groenewold was one of the UMCG researchers involved in this study. “It is good news that so many patients feel better after treatment. Yet, we do not know how come they feel better. This is because we do not yet know which elements and processes of the treatment lead to the changes found. Therefore, the results of our study are not direct evidence of treatment’s effectiveness. Hence, we cannot yet advise patients on whether or not to travel to Utah for the CFX-treatment”.
According to researcher Annemieke Visser, this was an essential first study: "The results of this study are very important for people struggling with long-term consequences of concussion. This is also evident from the discussions we have with various patient associations. We therefore advocate follow-up studies. In future research, we want to examine the effectiveness of specific components of the treatment. Then we can find out whether the treatment really does add value to Dutch care."
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The Dutch Hersenstichting funded the study with the aim of gaining more insight into the potential value of CFX treatment for people with long-term symptoms after concussion. This pilot study was conducted by Amsterdam UMC and UMCG, in collaboration with a national group of experts, doctors, experts by experience and the patient organisations Hersenletsel.nl and Stichting Hersenschudding.
