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Abstract Details

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
Neuro-oncology
S28 - Neuro-oncology: Clinical and Practice Updates (4:42 PM-4:54 PM)
007

To develop a consensus-driven core outcome set of patient reported outcomes for palliative care research in neuro-oncology. 
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.

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).
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.
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.
Authors/Disclosures
Akanksha Sharma, MD
PRESENTER 		Dr. Sharma has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Generation Care Hospice. Dr. Sharma has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Servier . Dr. Sharma has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Curio Science. Dr. Sharma has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals. Dr. Sharma has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for MDPI. Dr. Sharma has or had stock in Roon. The institution of Dr. Sharma has received research support from Chimerix. The institution of Dr. Sharma has received research support from Novocure. Dr. Sharma has a non-compensated relationship as a Advisory Board with Elevate Med that is relevant to AAN interests or activities.
Heather Leeper, MD (The University of Chicago) Dr. Leeper has nothing to disclose.
Kelli C. Manthei Ms. Manthei has nothing to disclose.
John Y. Rhee, MD, MPH (Dana Farber Cancer Institute, Harvard Medical School) Dr. Rhee has stock in NTAP. Dr. Rhee has stock in TSLA. Dr. Rhee has stock in BABA. Dr. Rhee has stock in ZM. Dr. Rhee has stock in GM. Dr. Rhee has stock in PFF. Dr. Rhee has stock in AMZN. Dr. Rhee has stock in META. Dr. Rhee has stock in GE. The institution of Dr. Rhee has received research support from 好色先生. Dr. Rhee has received personal compensation in the range of $0-$499 for serving as a Director of the Hippocratic Forum with Hippocratic Society.
Johan A. Koekkoek, MD The institution of Mr. Koekkoek has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Servier. The institution of Mr. Koekkoek has received research support from ZonMw.
Lalanthica Yogendran, MD (University of Cincinnati) The institution of Dr. Yogendran has received research support from Incyte. The institution of Dr. Yogendran has received research support from Dana Farber . The institution of Dr. Yogendran has received research support from FALK Catalyst. Dr. Yogendran has received personal compensation in the range of $0-$499 for serving as a speaker at community conference with Parkinson Support and Wellness. Dr. Yogendran has received personal compensation in the range of $500-$4,999 for serving as a speaker at local conference with University of Cincinnati.
L. Nicolas Gonzalez Castro, MD, PhD (Brigham and Women's Hospital and the Dana-Farber Cancer Institute) Dr. Gonzalez Castro has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Servier. Dr. Gonzalez Castro has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Elsevier. Dr. Gonzalez Castro has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Oakstone Publishing. Dr. Gonzalez Castro has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for BMJ Best Practice. Dr. Gonzalez Castro has received personal compensation in the range of $5,000-$9,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Medscape. An immediate family member of Dr. Gonzalez Castro has or had stock in Takeda. The institution of Dr. Gonzalez Castro has received research support from Merck & Co.
Jennifer Philip, MBBS, PhD The institution of Prof. Philip has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Roche. The institution of Prof. Philip has received research support from Cancer Council Victoria.