A scoping review: Understanding brain tumor patients' decisional needs and preferences

BACKGROUND: Informed, value-based healthcare decisions depend on individuals' decisional needs and preferences. Adequately addressing them may improve decision experience and quality. This scoping review aims to assess study findings on decisional needs and preferences of patients with a brain tumor (PwBT) (glioma, meningioma, brain metastases) throughout the disease trajectory, including findings on decision aids and interventions.

METHOD: The methodological framework by Arksey & O-Malley for scoping reviews was used. A systematic search was performed in PubMed.

RESULTS: We identified 20 studies on decisional needs and preferences of PwBT and 6 studies on decision aids. Most patients prefer a collaborative or active role in decision-making, and they value quality of life (QoL), functional independence, and survival as treatment outcomes. Patients require tailored amounts and types of information and need support maintaining hope, establishing trust, and with diminished medical decision-making abilities. Decision aids focused on information provision or shared decision-making (SDM), with mixed results on patient participation and satisfaction.

DISCUSSION: SDM could help address PwBT's needs and preferences. QoL and functional independence are crucial yet underexplored factors in decision-making. Further research is needed to better integrate individual patient outcome preferences into SDM and to evaluate tools that support informed and value-based decisions.