Abstract
Advance care planning (ACP) is a process of reflection and communication of a person’s future health care preferences, and has been shown to improve end-of-life (EOL) care for patients. The aim of this systematic review is to present an evidence-based overview of ACP in patients with primary malignant brain tumors (pmBT). A comprehensive literature search was conducted using medical and health science electronic databases (PubMed, Cochrane, Embase, MEDLINE, ProQuest, Social Care Online, Scopus, and Web of Science) up to July 2016. Manual search of bibliographies of articles and gray literature search were also conducted. Two independent reviewers selected studies, extracted data, and assessed the methodologic quality of the studies using the Critical Appraisal Skills Program’s appraisal tools. All studies were included irrespective of the study design. A meta-analysis was not possible due to heterogeneity amongst included studies; therefore, a narrative analysis was performed for best evidence synthesis. Overall, 19 studies were included [1 randomized controlled trial (RCT), 17 cohort studies, 1 qualitative study] with 4686 participants. All studies scored “low to moderate” on the methodological quality assessment, implying high risk of bias. A single RCT evaluating a video decision support tool in facilitating ACP in pmBT patients showed a beneficial effect in promoting comfort care and gaining confidence in decision-making. However, the effect of the intervention on quality of life and care at the EOL were unclear. There was a low rate of use of ACP discussions at the EOL. Advance directive completion rates and place of death varied between different studies. Positive effects of ACP included lower hospital readmission rates, and intensive care unit utilization. None of the studies assessed mortality outcomes associated with ACP. In conclusion, this review found some beneficial effects of ACP in pmBT. The literature still remains limited in this area, with lack of intervention studies, making it difficult to identify superiority of ACP interventions in pmBT. More robust studies, with appropriate study design, outcome measures, and defined interventions are required to inform policy and practice.
Highlights
Primary brain tumors (BT) are a diverse group of neoplasms, affecting approximately 7 persons per 100,000 population annually worldwide (1)
The findings from the included studies in this review showed that around 0–76% of primary malignant brain tumor (pmBT) patients had an advance directive (AD) completed (3, 5, 17, 18, 23, 26, 28, 30, 31, 34)
This systematic review provides an evidence-based overview of Advance Care Planning (ACP) in pmBT patients, assimilating published literature for currently available evidence by including both quantitative and qualitative studies
Summary
Primary brain tumors (BT) are a diverse group of neoplasms, affecting approximately 7 persons per 100,000 population annually worldwide (1). The diagnosis of primary malignant brain tumor (pmBT) heralds a dramatic change in life expectancy for patients, with limited effective treatment options, progressive neurological deterioration, and high mortality rates. Despite advances in available therapies, GBM patients have a median survival of approximately 14 months only (2). Many pmBT patients experience ongoing difficulties related to the disease itself with high symptom burden (3, 4), and treatments used. They experience other disabilities, such as fatigue, difficulties with mobility and self-care, cognitive and intellectual decline, behavioral dysfunction, personality changes, and psychological problems, such as depression and anxiety. There are significant implications of these disabilities on caregivers with role reversal within families, vocational issues, financial strain, and reduced quality of life (QoL) (5, 6)
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