Abstract Details

Title Longitudinal Perception of Prognosis of Patients with High Grade Glioma Compared to their Caregivers and Clinicians

Topic Neuro-oncology

Presentation(s) P1 - Poster Session 1 (12:00 PM-1:00 PM)

Poster/Presentation
Number 13-010

Objective Evaluate the longitudinal perception of prognosis of patients compared to their caregivers and their providers during the adjuvant treatment of newly diagnosed high grade glioma.

Background Treatment options and prognosis are limited for patients with high grade glioma (pwHGG), underscoring the importance of patient and caregiver understanding to prioritize goals of care and quality of life (QOL). Although addressed by multiple providers, patients and caregivers may experience discordance in understanding the prognosis. This may be related to patient/caregiver perception, cognitive decline as a result of the tumor and/or treatment, or failure by the clinician to clearly articulate this information under emotional circumstances.

Design/Methods After IRB approval, 16 pwHGG, their caregivers and their providers reported an overall survival estimate at each monthly visit during adjuvant treatment, as part of a larger survey. Options included “weeks,” “weeks to several months,” “several months to years,” “indefinite number of years”, or “I do not wish to answer.”

Results The majority of the patient/caregiver clusters have completed the study with estimated closure in November 2019. The perception of the patient differs from the caregiver at almost each visit. Regardless of the counseling provided by provider, the perception of both tends to change at each visit and can vary from dismal to overtly optimistic. There does not appear to be dramatic discrepancy between the neuro-oncology and palliative care provider’s perception of prognosis.

Conclusions

Newly diagnosed pwHGG and caregivers vary in their perception of prognosis, deviating not only from each other but also differing at each visit throughout the course of their illness. The providers’ perception appeared to remain consistent but often varied from that of the patient and caregiver. Providers need to be aware that prognostic understanding appears to fluctuate throughout the course of illness and cannot be clarified via a single discussion.

Authors/Disclosures
Akanksha Sharma, MD (Sutter Health) 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 $5,000-$9,999 for serving on a Speakers Bureau 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.
	No disclosure on file
	No disclosure on file
	No disclosure on file
	No disclosure on file
Maciej M. Mrugala, MD, PhD, MPH, FAAN (Mayo Clinic)	Dr. Mrugala has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Veevo Biomedicines Inc. Dr. Mrugala has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Arbor Pharmaceuticals. Dr. Mrugala has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Astra-Zeneca. Dr. Mrugala has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Servier. Dr. Mrugala has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Medscape. Dr. Mrugala has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck. Dr. Mrugala has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Kyiatec . The institution of Dr. Mrugala has received research support from Arbor Pharmaceuticals. Dr. Mrugala has a non-compensated relationship as a Program Director with Society for Neuro-Oncology that is relevant to AAN interests or activities.
	No disclosure on file
	No disclosure on file
Alyx B. Porter, MD, FAAN (Mayo Clinic)	Dr. Porter has a non-compensated relationship as a Board Member with American Brain Foundation that is relevant to AAN interests or activities.