Abstract Objectives: To assess and understand the awareness and experience of brain tumour (BT) patients in discussing Advance Care Planning (ACP), to identify main symptoms experienced, physical and functional status perceived quality of life, and level of coping. Methods: A prospective cohort study with an initial open-ended questionnaire followed by semi-structured interview questions regarding ACP with 18 patients diagnosed with BT (WHO Grade I-IV, metastatic BT) in hospital and community. Standardized assessments measured coping strategies, and quality of life (QoL). Interview transcripts regarding ACP discussions were analyzed, coded and interpreted using qualitative analytic techniques for thematic analyses. Results: Participants' mean age was 51 years (range 22-65 years), female (61%); median time since BT diagnosis was 1.5 years and just over half (56%) had glioblastoma multiforme (GBM). Fatigue was the most common symptom reported by 83% of participants. Overall, participants indicated good QoL and used more problem-focused coping strategies including ‘acceptance’ and ‘positive reframing’. Thematic analyses indicated that participants had limited awareness and understanding of ACP, variable views on appropriate timing of ACP discussions and change of decisions over illness trajectory. Most felt able to discuss ACP and preferred dedicated sessions by a trained health professional. Conclusion: This study highlights the importance of providing timely information regarding ACP to BT patients during the course of their disease. Established ACP discussions have an important role in enhancing patient autonomy and to guide delivery of end-of-life care. The demonstrated low uptake of ACP in this pilot study shows need for improved awareness in clinical practice for timely ACP discussions and multifaceted interventions system-wide in implementing ACP
Keywords: advance care planning; brain cancer; brain tumour; glioblastoma; qualitative research