Impact of glioblastoma (GBM)-related cognitive dysfunction (CD) on caregiver burden: Preliminary results from multi-site study in the U.S.


Conference Paper

16 Background: GBM is a largely incurable, highly aggressive cancer with high incidence of CD. Caregivers face heightened stress with loved one’s limited life expectancy and additional duties. To better understand this unique group, a survey tool was developed to examine effect of CD on caregiver burden. Methods: Four of 10 planned academic centers are enrolling towards achieving 200+ completed surveys. The survey was developed step-wise: 1) literature review of primary brain tumors, Alzheimer’s disease, and dementia to identify domains; 2) focus groups with neurooncologists and American Brain Tumor Association advocates to narrow domains; 3) caregiver interviews to verify selected domains; 4) single-site pilot study to confirm content (n=20). Dyads with caregiver survey and respective patient’s clinical data are created as possible. Results: Complete data from 31 caregivers and 28 dyads enrolled at Huntsman Cancer Institute, University of Utah and University of California, Los Angeles are currently available. Response rate was 88% for caregivers and 90% for patients. Among caregivers, 87% were patient spouse/partner, 84% female, average age 56 years, 42% currently employed, 32% have no additional help, and 26% are primary caregivers for others. Patients were male (74%), average age 59 years, not working (84%), and being treated for initial diagnosis (67%). Proportion of caregivers performing ≥ 1 caregiving task, i.e. meal preparation, doubled from before to after diagnosis (48% vs. 97%). The majority of caregivers (90%) perceived memory problems in a loved one over last 14 days. Trouble remembering recent events or things interfered with 71% of caregivers’ daily life "somewhat", "quite a bit", or "very much". When ranking effect of CD on caregiver’s general quality of life on a scale of 0 (none) to 10 (significant), 60% and 23% of caregivers indicated ≥ 5 and ≥ 8, respectively. Caregivers’ responses to survey satisfaction questions showed only 23% feel enough is being done to understand caregiving in GBM and 76% were satisfied overall with the survey. Conclusions: Caregivers are affected daily and significantly by GBM-related CD. Results will be updated at time of presentation.

Full Text

Duke Authors

Cited Authors

  • Au, TH; Bauer, H; Menon, J; Willis, C; Iacob, E; Ma, J; Watanabe, A; Nelson, R; Korytowsky, B; Singh, P; Marshall, A; Willmarth, N; Nghiemphu, PL; Dovek, L; Peters, KB; Balajonda, B; Cohen, AL; Colman, H; Stenehjem, DD; Brixner, DI

Published Date

  • December 1, 2018

Published In

Volume / Issue

  • 36 / 34_suppl

Start / End Page

  • 16 - 16

Published By

Electronic International Standard Serial Number (EISSN)

  • 1527-7755

International Standard Serial Number (ISSN)

  • 0732-183X

Digital Object Identifier (DOI)

  • 10.1200/jco.2018.36.34_suppl.16