Comparing Knowledge and Perceptions of Palliative Care Among Neuro-Oncology Patients, Caregivers, and Providers to a Representative U.S. Sample

Background: Primary brain tumors (PBTs) pose a significant health challenge, affecting patients and their caregivers. While early integration of palliative care (PC) has shown benefits in advanced cancer, its integration for PBT patients, particularly glioblastoma (GBM) patients, remains complex. We hypothesized that our previous PC integration efforts may have failed due to knowledge-gaps and misconceptions among patients, caregivers, and providers. Objective: This study aimed to identify knowledge gaps and misconceptions about PC among patients with primary brain tumors (PBTs), their caregivers, and their medical providers. Method: An electronic survey was distributed to PBT patients, caregivers, and medical providers, that included questions regarding PC from the Health Information National Trends Survey (HINTS). Survey responses were analyzed; comparisons were made between the 3 groups as well as the general population. Results: Of 141 respondents (59 patients, 57 caregivers, and 25 providers), each group held perspectives on PC differing from the general population. While all groups had an improved understanding of PC’s role in symptom management, uncertainty persisted among patients and caregivers regarding life-prolonging treatment and certain PC goals like caregiver support or end-of-life care. Conclusion: Understanding gaps in knowledge and perceptions of PC among PBT patients and caregivers is crucial for effective intervention, with caregivers playing a vital role in advocating for PC. Future research should explore factors influencing these perceptions and development of targeted education to improve early PC referrals for patients with PBTs.

Duke Scholars

Author James Emmett Herndon II Biostatistics & Bioinformatics, Division of Biostatistics

Author Mary Louise Affronti School of Nursing

Author Katherine Barnett Peters Neurosurgery, Neuro-Oncology

Author Christopher Jones Medicine, Geriatrics and Palliative Care

Author Margaret Johnson Neurosurgery

Author Mustafa Khasraw Neurosurgery

Author David Michael Ashley Neurosurgery