Developing Priorities for Palliative Care Research in Advanced Liver Disease: A Multidisciplinary Approach

Abstract

Individuals with advanced liver disease (AdvLD), such as decompensated cirrhosis (DC) and hepatocellular carcinoma (HCC), have significant palliative needs. However, little research is available to guide health care providers on how to improve key domains related to palliative care (PC). We sought to identify priority areas for future research in PC by performing a comprehensive literature review and conducting iterative expert panel discussions. We conducted a literature review using search terms related to AdvLD and key PC domains. Individual reviews of these domains were performed, followed by iterative discussions by a panel consisting of experts from multiple disciplines, including hepatology, specialty PC, and nursing. Based on these discussions, priority areas for research were identified. We identified critical gaps in the available research related to PC and AdvLD. We developed and shared five key priority questions incorporating domains related to PC. Conclusion: Future research endeavors focused on improving PC in AdvLD should consider addressing the five key priorities areas identified from literature reviews and expert panel discussions. (Hepatology Communications 2021;0:1-12).

Inequity in end‐of‐life care for patients with chronic liver disease in England

“…We observed a year‐on‐year increase in SPC input for patients with CLD without HCC from 13% to 23% in the study period—a pattern mirrored by similar studies elsewhere 15,16 . This may reflect the increased interest in and promotion of the role of SPC in the management of patients with advanced CLD in recent years, with a sharp rise in the number of papers published on the topic 27 . However, the rate remains significantly lower than for patients with HCC, just under 50% of whom consistently received inpatient SPC input in their LYOL over the 5‐year period.…”

“…15,16 This may reflect the increased interest in and promotion of the role of SPC in the management of patients with advanced CLD in recent years, with a sharp rise in the number of papers published on the topic. 27 However, the rate remains significantly lower than for patients with HCC, just under 50% of whom consistently received inpatient SPC input in their LYOL over the 5-year period. Importantly, the stability seen in the HCC group suggests that the increase observed in the CLD group indicates a true change in clinical practice rather than a change in coding practice over time.…”

Early Implementation of Palliative and Supportive Care in Hepatocellular Carcinoma

“…There have been several additional studies beyond the nine featured in this review, in both the end-stage liver disease and cancer domains that have included small numbers of patients with HCC in their respective cohorts. 97 98 99 100 101 102 103 104 However, in these reports the etiologies of other malignancies and non-HCC patients were significantly higher and thus outcomes from the studies are difficult to extrapolate to the primary liver cancer population. Additionally, several studies address hospice care rather than early intervention palliative care.…”

“…That study was performed in patients awaiting or undergoing liver transplantation. There have been a number of additional studies beyond the 9 featured in this review, in both the end-stage liver disease and cancer domains that have included small numbers of patients with HCC in their respective cohorts [113][114][115][116][117][118][119][120]. However, in these reports the aetiologies of other malignancies and non-HCC patients were significantly higher and thus outcomes from this the studies are difficult to extrapolate to the primary liver cancer population.…”

Palliative care experience and perceived gaps in training among transplant hepatology fellows: A national survey

“…[13][14][15][16][17] There is a growing recognition of the need for PCspecific education within the field of gastroenterology (GI) and hepatology. [18,19] In a descriptive study of GI fellows' performances during a liver-specific, objective structured clinical examination (OSCE), fellows failed to discuss important aspects of end-of-life (EoL) care during the encounter, and over two-thirds of fellows felt that they performed poorly. [20] Attitudes or comfort with providing PC among hepatology trainees are unknown, and to date, there is no formalized PC curriculum during hepatology training.…”