EOLP-01. COPAL CNS: a Delphi developed Core Outcome set of patient-reported outcomes for PALliative care interventions in adults living with primary CNS cancer by a global interdisciplinary and patient stakeholder group

Abstract BACKGROUND Adults with primary CNS cancer (APCC) have unmet needs arising from multidimensional distress. Palliative care (PC) improves quality of life (QOL) across the disease trajectory by alleviating suffering in multiple domains, distinct from end-of-life care. A core outcome set (COS) of patient-reported outcomes (PROs) for measurement and reporting applicable to the global neuro-oncology community is needed to advance clinical practice, harmonize research outcomes, and build the evidence-base of PC in neuro-oncology. METHODS PROs directly reported by APCC and caregivers from peer-reviewed literature and the 2023 National Brain Tumor Society-led APCC QOL research roundtable were collected, deduplicated, and categorized into 6 domains per US National Clinical Practice Guideline for Quality Palliative Care. A global interdisciplinary panel of consumers, advocates, clinicians and researchers totaling 75 members undertook a 3-round anonymous Delphi survey to achieve consensus on Level 1 COS (ranked critically important by ≥80% of panelists) and Level 2 COS (ranked critically important by ≥70% of panelists) per Consensus-based Standards for the Selection of Health Measurement Instruments guidance. RESULTS Response rates from the 75 panelists were 100% (75), 96% (72) and 95% (71) over the first, second and third rounds respectively. Panelists reached consensus on 9 Level 1 COS outcomes and 4 Level 2 COS outcomes. Level 1 agreed outcomes included seizures, difficulty communicating, physical functioning, depression, advance care planning, information around end of life options, guidance about illness trajectory, fatigue and anxiety, with Level 2 outcome being resilience, existential distress, pain and decision-making support. CONCLUSION A COS of PROs for measurement and reporting in PC interventions in research and routine care settings for APCC has been developed by a global interdisciplinary and patient stakeholder group using an anonymous Delphi survey process. Future research will validate this COS and identify instruments.