P15.02.B THE EXPERIENCES OF PATIENTS WITH RECURRENT HIGH-GRADE GLIOMAS USING A PATIENT DECISION AID DURING NEUROSURGICAL CONSULTATIONS

Abstract BACKGROUND Despite intensive surgical and oncological treatment, patients with a high-grade glioma (HGG) face an average survival time of less than two years from diagnosis, and all patients will inevitably experience a tumor recurrence during their disease trajectory. When the recurrence is diagnosed, a decision about treatment and care needs to be made. Previous studies show that patients with HGG prefer to be involved in shared decision making (SDM) and want their family members to be involved. To increase patient and family involvement and support SDM, we developed and implemented a patient decision aid, the Decision Helper, in neurosurgical consultations with patients with recurrent HGG. The Decision Helper is a paper-based tool that helps structure the consultation and decision making, emphasizing the available treatment options and patient preferences. The objective of the present study was to explore how patients and family members experience using the Decision Helper. MATERIAL AND METHODS Semi-structured interviews were conducted with patients and their family members immediately after the neurosurgical consultation. The interviews were transcribed and analyzed using a reflexive thematic analysis approach. RESULTS Fourteen patients and 14 family members were interviewed. Most of the family members were the patients’ primary caregivers. The analysis generated four overall and overlapping themes: Theme I: The Decision Helper’s impact on the consultation, focusing on the clinicians’ use of the Decision Helper. Theme II: The Decision Helper’s effect on the decision, emphasizing decisional conflict and the actual treatment decision. Theme III: The Decision Helper’s impact on patient involvement, describing the patients’ and families’ experiences of decision involvement and decision support. Theme IV: The acceptability of the Decision Helper concerning the layout and use of the Decision Helper during the consultation. CONCLUSION Patients with recurrent HGG and their family members highlighted the Decision Helper as increasing their level of involvement and understanding of the clinician’s information. The Decision Helper made differentiating between the available options easier, and patients and family members appreciated the tangible paper-based format. Even in cases where the patients had a clear decision preference before the consultation, they were positive towards using the Decision Helper and expressed that it helped decrease their decisional conflict. The use of patient decision aids in neurosurgery is relatively new. However, the findings from the present study indicate the positive potential of implementing SDM and patient decision aids for this patient population.