Shared decision making with brain tumor patients

In brain tumor treatment, we strive for an optimal balance between maximizing tumor reduction to increase survival, and minimizing long-term functional deficits to preserve cognitive skills, socio-professional functioning and aspects of quality of life. Patients have their own specific personal goals they wish to pursue. Cancer patients express the need for more information on late effects of treatment in the decision-making phase, as well as a need for a greater (shared) involvement in the decision-making process. However, research has shown that doctors are often not much aware of patients’ personal goals and of the effects of treatment on patient goals, consequently, refrain from discussing how these goals and how these might be affected by any given treatment option. We expect that collecting information about the individual patients’ personal goals and providing the clinical care team with this information will not only improve informed decision-making, but also goal-concordant decision-making. Making more accurate information on patient personal goals available better enables balancing and personalizing the gains and losses in terms of functional outcome.

Based on previous research in other cancer patients, we hypothesize that when more information is shared on patients’ personal goals during treatment decisions, shared decision-making regarding neurosurgical and neuro-oncological treatment, and subsequent aspects of quality of life, will improve and will result in lower symptoms of anxiety and depression as compared to the clinical situation before introduction of the Goings-On app.

Questionnaires will be administered to all brain tumor patients included in the study following the first neurosurgical consultation, the first neuro-oncological consultation (if applicable), and 3, 6 and 12 months thereafter.

In the first year of the study, patients will receive care as usual. From the second year onwards, we will implement the scientifically developed Goings-On app in clinical practice to identify individual patients’ personal goals and symptoms. The Goings-On app allows patients to share more about their personal background with the clinical team by logging individual life goals, goal attainment and symptom burden in a minute a day. The Goings-On app is used from several days before shared neurosurgical or neuro-oncological decision making until 6 months thereafter.