Longitudinal Perception of Prognosis of Patients with High Grade Glioma Compared to their Caregivers and Clinicians (2588)
Publication Title
Neurology
Document Type
Article
Publication Date
4-25-2020
Keywords
california; sjci
Abstract
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.
Disclosure: Dr. Sharma has nothing to disclose. Dr. Wolfe has nothing to disclose. Dr. Barrera has nothing to disclose. Dr. Williamson has nothing to disclose. Dr. Farfour has nothing to disclose. Dr. Mrugala has received research support from Arbor Pharmaceuticals. Dr. Edwin has nothing to disclose. Dr. Sloan has nothing to disclose. Dr. Porter has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Boston biomedical data safety monitoring board.
Area of Special Interest
Neurosciences (Brain & Spine)
Area of Special Interest
Cancer
Specialty/Research Institute
Neurosciences
Specialty/Research Institute
Oncology
Comments
Akanksha Sharma, Eric Wolfe, Celina Barrera, Samantha Williamson, Hannah Farfour, Maciej Mrugala, Mark Edwin, Jeff Sloan, Alyx Porter