A new application for patients suffering from a brain tumor

Tilburg – ETZ Hospital (Elisabeth Tosteden Hospital) will soon use a new application for patients with a brain tumor in clinical practice; Goings-On app. In this app, patients can indicate and track what is important to them in daily life. The app has been used for scientific research since July 2022 and will continue in clinical practice due to initial positive experiences from patients and practitioners.

Goings-On app

Patients can enter their personal goals into the Goings-On app and indicate exactly what is important to them in daily life. Such as important hobbies or social roles that you perform. Additionally, patients can track their symptoms and goals daily in the app. This can be done in about one minute a day. The use of the application is integrated into care in the neurosurgery and neurology outpatient clinic and in the neurosurgery department during hospital admission, focusing on the initiation of the treatment process in which many important choices are made.

The Goings-On app was developed by Petra Hoogendoorn. Her partner Richard van den Heuvel had a brain tumor. The course of his illness was an inspiration to her Application development.

Person-centred decision making

Using the app, patients are involved almost immediately from diagnosis as an important partner in the treatment decision-making process. Practitioners have direct access to what patients enter into the app via the Electronic Patient File (EPD). Here they can get to know the patient better at a glance, thus focusing the conversation more easily on that patient. According to Iris Brass, a doctoral researcher at ETZ, that’s what it’s all about. “Really coming to a decision together, that’s what it’s all about. This way, patients are recognized as experts in their lives and a conversation can be had about the impact of treatment on the patient’s life. Using the app, patients are more willing to have a conversation with their doctor.” If someone asks What is the most important thing to you in life, you will probably think about it for a moment. It’s a basic question, but often not easy to answer right away.

Evaluation with practitioners and patients

The fact that patients can participate in the conversation better prepared is also a good idea for practitioners. Iris: “We have evaluated the app with practitioners and they have found the app very interesting. They want to know what is important to the patient. The app and the link with the EPD ensure this is taken care of structurally and with each patient. “They can immediately focus on matters of key importance to the patient. “

Patients also indicate that they are positive about using the Goings-On app. “We also hear from a number of patients that they enjoy taking a moment to reflect on what they find important every day.”

research

Iris Bras is currently conducting her doctoral research on Goings-On. The study will investigate the impact of using the Goings-On app on shared decision making. Search is part of ZonMw Top Specialty Care and Research (TZO) Program., aims to personalize the course of care for patients with a brain tumor. The research is being conducted in collaboration with the Department of Cognitive Neuropsychology at Tilburg University. The results of the study are expected to appear at the end of 2024.

Are you interested in being informed of developments in this research? A research newsletter is sent out regularly. You can sign up to receive this newsletter by sending an email to Iris Bras, [email protected]

Questions about research? Please also contact Iris Bras, [email protected]