Impact program

‘How can patients pick up their lives again? Every contribution counts’

Researcher Karin Gehring, Tilburg School of Social and Behavioral Sciences and Neurosurgery Department, Elisabeth-TweeSteden Hospital

“Worldwide a lot of research is being conducted into describing cognitive damage in patients with brain tumors. But very little is known about its treatment. Some of the people being treated for brain cancer are relatively young, in their 40s, so in the prime of their lives and often with young families. And then all of a sudden they fall ill.

In first instance, they are just glad that they have survived the (neuro-)surgery. Only later on, they start to process what has happened. They have to get on with their lives, but are no longer able to keep up in certain areas. They can no longer cope with the noise of their  family at home, are unable to perform their work in the way they used to, are overwhelmed by the hustle and bustle of parties, and have difficulty planning tasks. That is what I want to do something about. How can we help them to pick up their lives again?”

Battery of tests

To be able to answer that question, it is necessary to first investigate to what extent there is cognitive damage in patients. Karin Gehring: “Complaints in the language or speech centers or regarding mobility are mainly being observed. To identify cognitive deficits like difficulty planning, memory problems, or oversensitivity to stimuli, you have to administer a battery of tests. For example, how many words on your shopping list can you remember? In the Elisabeth-TweeSteden Hospital we administer a test to neurosurgery patients. The purpose of these tests is to gain insight into patients’ performance over a period of 24 months in the areas of memory, concentration, and planning. Together with PhD student Sophie van der Linden and project leaders professor Margriet Sitskoorn and neurosurgeon Geert-Jan Rutten we also investigate the relationship with fatigue, work, and functioning independently. For which patients do we need to arrange for cognitive rehabilitation in a timely fashion? There are even indications that cognitive tests can predict how the tumor will be developing. That is also something we will be further investigating.”

Pioneering spirit

Sometimes researchers need a pioneering spirit. “That certainly was the case when we developed the ReMind app. It originated in my PhD research. I studied the rehabilitation of patients with cognitive damage after a brain tumor. The training program consisted of doing various exercises, offering strategies – how do you cook a meal if you have trouble planning multiple tasks –, and playing video games especially designed for this group to improve concentration. In the short term, patients indicated that the training helped them, but those effects wore off in the long term. An improvement in cognitive skills emerged only after six months. This surprised us at first but in fact it is logical: learning new strategies and learning to apply them takes time.“

“The program was too intensive at the time to implement in clinical practice. Therefore, we developed an app together with a patient and his wife. That is not as straightforward as it sounds, given the fact that you are working with many parties, come up against ownership issues, and try to develop an app for the long term. The latter thing means that you also need to maintain it, which costs time and money. That is why we have teamed up with CbusineZ, a business party with lots of experience. At the same time, we are looking into possibilities to make the app suitable for other target groups as well.”

New guideline

Since the research field is relatively small, Gehring has met researchers from all over the world. “You see each other at conferences and you co-author a chapter for a book. Every contribution counts. For example, I wrote a paper on the evidence of specific treatments of brain tumors for the new guideline for neuropsychological rehabilitation. Based on that guideline, neuropsychologists select the best treatment for their patient. I regularly visit patient associations to give information and to share experiences. That always gives me a lot of energy.”

Innovative research can have a positive impact even before the results are out”

Precision radiation

In a different research project with the ETZ, Gehring as well as PhD students Wietske Schimmel and Eline Verhaak, professor Margriet Sitskoorn and radiation oncologist Patrick Hanssens, are studying the effects of precision radiation with a gamma knife compared to whole brain radiation therapy in patients with ten or more brain metastases. These are cancer cells that have spread to the brain from primary tumors elsewhere in the body. “Although whole brain radiation therapy is now the standard treatment in the Netherlands, worldwide research has shown that the two types of treatment are comparable as regards keeping the brain metastases under control. But we know that whole brain radiation therapy also causes damage to healthy brain tissue, resulting in cognitive dysfunctions. With gamma knife radiosurgery, this healthy tissue is hardly affected or not at all. Since whole brain radiation therapy is standard, many doctors had to get used to the new gamma knife approach. As a result, not many patients were referred at first. A change now seems to have taken place and more patients are sent to us to participate in the research. Thus, you can see how such innovative research can have a positive impact even before the results are out. Perhaps the results of our research will contribute to adapting the guidelines for the treatment of brain metastases.”

Tilburg University and ETZ complement each other

The collaboration with the ETZ is going well. Gehring: “We need each other. The data we are collecting via tests before and after treatment at individual levels are used by the neurosurgeons, neurologists, nurses and psychologists to find out how a patient is doing at a cognitive level before and after surgery. At the same time, we use those data to be able to draw conclusions for larger groups of patients. What problems do they come up against and to what extent? What are the characteristics of patients who do less well over a longer period of time compared to patients with better quality of life? Our new genetic research project may help to make more accurate predictions. We complement each other’s work.”