Palliative care service utilization and advance care planning issues for adult glioblastoma patients: A systematic review.

Abstract

2036 Background: Glioblastoma (GBM) is a devastating disease with a median survival under 2 years and a 10-year survival rate of 0.71%. As patients with GBM suffer simultaneously from both a terminal cancer and a neurodegenerative disease, proactive provision of advance care planning (ACP) and palliative care (PC) seem appropriate. We conducted a systematic review exploring the published literature on the prevalence of ACP, healthcare services utilization at the end of life (EOL, including PC services), and location of death among adults with GBM, and the experiences of their caregivers. Methods: We systematically searched PubMed, Embase, Scopus, and Cochrane Library from database inception until 12/20/2020, using search terms including ‘glioblastoma’, ‘end of life’, ‘advance care planning’, and ‘advance directive’. Preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines were followed. Inclusion criteria were quantitative and qualitative studies written in English of adults with GBM and their caregivers, with at least 20 subjects. Included studies were assessed for quality using the Newcastle-Ottawa Scale. Results: We screened 344 article abstracts and 39 full text articles to yield a final cohort of 16 articles that fit inclusion criteria. These studies reported the experiences of 10,706 GBM patients and 123 caregivers. All were nonrandomized studies conducted in six countries with all but two published in 2014 or later. Across studies, ACP documentation varied from 4-55%, PC referral was pursued in 39-40% of cases, and hospice referrals were made for 66-76% of adult GBM patients. Hospitalizations frequently occurred at the EOL, 20-56% of patients spent over 25% of their overall survival time hospitalized, and 39-64 % of deaths occurred in the home setting. Caregivers commonly reported restrictions on their ability to work (60%), financial barriers to care (29%), and feeling unprepared (29%). Conclusions: Despite having both a terminal disease and neurocognitive decline, a majority of adults with GBM do not pursue ACP or have access to PC. There is a dearth of focused and high-quality studies on ACP, PC, and hospice use among adults with GBM. Prospective studies that address these and additional aspects related to end-of-life care in this population, such as healthcare costs and inpatient supportive care needs, are needed.