2. August, 21

WP18 – Shared decision-making for patients with glioblastoma


Shared decision making (SDM) and the use of patient decision aids have, in several studies, been proven to positively affect cancer patients’ experience of involvement, emotional well-being, and their experience of decision regret. However, the effect of SDM and the use of patient decision aids has not yet been explored in patients with GBM.

We have developed a patient decision aid tailored to patients with GBM called the Decision Helper. We hypothesize that SDM and the use of the Decision Helper might positively impact GBM patients’ decisional experience, their knowledge about their treatment options, and their degree of regret related to the decision.  


Primary objective:

  • To assess if the use of the Decision Helper affects the degree of patient involvement and SDM in neurosurgical consultations where a GBM patient and a neurosurgeon make treatment decisions.

Secondary objectives:

  • To assess if using the Decision Helper affects the GBM patients’ and families’ knowledge about the options and their prognostic understanding.
  • To assess if using the Decision Helper affects the GBM patients’ and families’ experience of regret related to the treatment decision.
  • To explore how GBM patients, family members, and surgeons experience using the Decision Helper as part of the conversation.


The study will be carried out as a multicentre pre-post intervention study.  

In the pre-intervention phase, clinical practice proceeds, and baseline data are collected. After a thorough introduction to SDM, the included surgeons will use the Decision Helper to support their decision-making consultations in the post-intervention phase.

The degree of SDM during the consultations will be assessed using the observer measure OPTION 5. The experiences, knowledge and decisional regret of patients with GBM and their family members will be assessed using a combination of questionnaires and qualitative interviews.


The Decision Helper’s effect on improving SDM in neurosurgical consultations. Patients and their family members’ experiences, knowledge, and decisional regret of decision regret in relation to decision involvement.

Expected impact

We will generate new knowledge about the possible impact of SDM and the Decision Helper on neurosurgical consultations and how it may affect GBM patients’ and their families’ experiences, knowledge, and decisional regret. This knowledge will help tailor decision support to GBM patients and their families.