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

Abstract

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.