Abstract
Simple SummaryGlioblastoma is the most common primary brain malignancy diagnosed in adults, and, despite standard of care treatment, it carries a devastating prognosis with median overall survival of 16–21 months. Advance care planning and palliative care services utilization are important for this patient population due to their cancer and neurocognitive symptoms. We present a systematic review on prevalence of advance care planning, end-of-life services utilization, and experiences among adults with glioblastoma. The findings from our review serve as a foundation for future additional works, particularly prospective studies, that may address gaps in palliative care resource utilization and disparities in advance care planning for adult glioblastoma patients.Glioblastoma (GBM) has a median overall survival of 16–21 months. As patients with GBM suffer concurrently from terminal cancer and a disease with progressive neurocognitive decline, advance care planning (ACP) and palliative care (PC) are critical. We conducted a systematic review exploring published literature on the prevalence of ACP, end-of-life (EOL) services utilization (including PC services), and experiences among adults with GBM. We searched from database inception until 20 December 2020. Preferred reporting items for systematic reviews guidelines were followed. Included studies were assessed for quality using the Newcastle-Ottawa Scale. The 16 articles were all nonrandomized studies conducted in six countries with all but two published in 2014 or later. ACP documentation varied from 4–55%, PC referral was pursued in 39–40% of cases, and hospice referrals were made for 66–76% of patients. Hospitalizations frequently occurred at the EOL with 20–56% of patients spending over 25% of their overall survival time hospitalized. Many GBM patients 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 EOL care, such as healthcare costs and inpatient supportive care needs, are needed.
Highlights
Glioblastoma (GBM) is the most common primary brain tumor in adults, conferring a grim median overall survival of 16–21 months and a 10-year survival rate of 0.71% [1,2,3,4,5].Patients with GBM frequently experience challenging physical symptoms and neurologic deficits [6], and suffer from early cognitive decline with consequent impaired executive function [7]
While Quality Oncology Practice Initiative (QOPI) focuses on clinical practices for melanoma, breast, colorectal, gynecological, lymphoma, lung, and prostate cancers, some of the palliative care (PC) and EOL measures are applicable to neuro-oncology patients
According to one study of oncology practices that report and submit data on QOPI EOL measures, each subsequent year of participation led to improved rates of symptom documentation and PC referrals as well as increases in favorable performance related to care of pain compared to peer organizations [43]
Summary
Patients with GBM frequently experience challenging physical symptoms and neurologic deficits [6], and suffer from early cognitive decline with consequent impaired executive function [7]. A recent international panel defined advance care planning (ACP) as a process that “enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate” [10]. ACP is essential for goal-concordant care [11], and is pertinent for GBM patients as they have a terminal cancer and suffer from neurocognitive decline. Among adults with GBM pursuing standard radiation treatment, only 29% had ACP documented within 6 months of diagnosis and approximately half (55%) had ACP documentation before death [12]. Sborov et al found that oncologists can be overly-optimistic with inaccurate survival predictions, resulting in hastier EOL care for patients with advanced cancer [13]
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