What do we know about patients’ perspectives and expectations relating to palliative and end-of-life care in advanced liver disease? A systematic review of qualitative literature using ENTREQ guidelines

Das, Debasish; Ali, Mafas; Hussain, Ithsham Ali; Ingram, Josh Thomas Nigel; Johnstone, Rachel Sarah; Lopes, Jade Jessica; Wadee, Tasneem; Chakraborty, Nandini

doi:10.1136/bmjspcare-2021-003057

Cited by 6 publications

(11 citation statements)

References 29 publications

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“…[78][79][80] This follows from a general reluctance in hepatology to discuss end-of-life matters with patients, as clinicians either lack confidence in raising the topic of PC or feel that PC is irrelevant in the field, due to their assumption that liver disease can be reversed. 81 The current review did not identify any trials exploring patient perspectives in HCC-specific cohorts. Therefore, for the purposes of the review, we broadened our search to include ESLD, as the issues faced by both population groups are similar.…”

Section: Data Limitationsmentioning

confidence: 96%

“…In fact, where there is discussion of patient attitudes, it is either reported from the physician viewpoint 71 or geared towards an aspect of PC unrelated to the barriers to early PC implementation 78–80 . This follows from a general reluctance in hepatology to discuss end‐of‐life matters with patients, as clinicians either lack confidence in raising the topic of PC or feel that PC is irrelevant in the field, due to their assumption that liver disease can be reversed 81 . The current review did not identify any trials exploring patient perspectives in HCC‐specific cohorts.…”

Section: Barriers To Palliative Care Integration In Hccmentioning

confidence: 99%

“…A recent systematic review investigating this topic identified only eight trials exploring patient perspectives in individuals with liver disease, none of which explored the perspectives of patients with HCC. It concluded that there was a paucity of information in a subject so pertinent, given the prevalence and mortality of liver disease in high income countries 81 …”

Section: Summary and Potential For Future Researchmentioning

confidence: 99%

“…It concluded that there was a paucity of information in a subject so pertinent, given the prevalence and mortality of liver disease in high income countries. 81 Therefore, this review can stimulate research in multiple areas relating to PC in liver disease and HCC, in order to alter current medical practices and antecedent ideas pertaining to the delayed introduction of PC. For instance, there are no studies exploring the perspectives of patients living with HCC.…”

Section: Summary and Potential For Future Researchmentioning

confidence: 99%

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Barriers to palliative care in hepatocellular carcinoma: A review of the literature

Abasseri

Hoque

Kochovska

et al. 2023

J of Gastro and Hepatol

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Hepatocellular carcinoma (HCC) is a deadly and burdensome form of liver cancer with an increasing global prevalence. Its course is unpredictable as it frequently occurs in the context of underlying end-stage liver disease, and the associated symptoms and adverse effects of treatment cause severe suffering for patients. Palliative care (PC) is a medical specialty that addresses the physical, emotional, and spiritual needs of patients and their carers in the context of life-limiting illness. In other cancers, a growing body of evidence has demonstrated that the early introduction of PC at diagnosis improves patient and carer outcomes. Despite this, the integration of palliative care at the diagnosis of HCC remains suboptimal, as patients usually receive PC only at the very terminal phase of their disease, even when diagnosed early. Significant barriers to the uptake of palliative care in the treatment algorithm of hepatocellular carcinoma fall under four main themes: data limitations, disease, clinician, and patient factors. Barriers relating to data limitations mainly encapsulated the risk of bias inherent in published work in the field of PC. Clinician-reported barriers related to negative attitudes towards PC and a lack of time for PC discussions. Barriers related to the disease align with prognostic uncertainty due to the unpredictable course of HCC. Significantly, there exists a paucity of evidence exploring patient-perceived barriers to timely PC implementation in HCC. Given that patients are often the underrepresented stakeholder in the delivery of PC, future research should explore the patient perspective in adequately designed qualitative studies as the first step.

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Section: Data Limitationsmentioning

confidence: 96%

Section: Barriers To Palliative Care Integration In Hccmentioning

confidence: 99%

Section: Summary and Potential For Future Researchmentioning

confidence: 99%

Section: Summary and Potential For Future Researchmentioning

confidence: 99%

See 2 more Smart Citations

Barriers to palliative care in hepatocellular carcinoma: A review of the literature

Abasseri

Hoque

Kochovska

et al. 2023

J of Gastro and Hepatol

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“…The ENTREQ statement includes 21 items, which can be categorized into five aspects of a qualitative synthesis: introduction, methods and methodology, literature search and selection, appraisal, and synthesis of results. The ENTREQ statement is regarded as a useful reference and guideline for researchers to report the stages of synthesis (Das et al, 2021).…”

Section: Aimmentioning

confidence: 99%

Coping with Multiple Chronic Conditions in the Family Context: A Meta-Synthesis

Cheng

Bai

2021

West J Nurs Res

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This study was to collect, synthesize, and interpret the current qualitative evidence from studies that investigated family coping among people with multiple chronic conditions (MCCs). A meta-synthesis approach was used to report this study. A systematic search was performed in five electronic databases, including CINAHL, EMBASE, PsycINFO, Web of Science, and PubMed from January 2000 to December 2020. The PRISMA flow chart and Joanna Briggs Institute Qualitative Assessment and Review Instrument checklist are integrated into the meta-synthesis. A total of ten eligible studies including data from 381 participants were identified. Three meta-themes were identified in the synthesis: (1) family role maintenance in MCCs management, (2) coping as a family, and (3) be frustrated with family interactions. This meta-synthesis indicated the importance of maintaining social roles and family support within family interactions for coping with MCCs. It also demonstrated the frustrations in the family coping process experienced by people with MCCs. Health care professionals should understand the interactions between people with MCCs and their family members that may impact people’s coping. Such an understanding may contribute to the development of supportive programs such as family-based interventions for people with MCCs.

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The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis

Beresford,

Gelling,

Baron

et al. 2023

Health Expectations

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BackgroundLiver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom.MethodA systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649).ResultsOf 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature.ConclusionThis review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life.Patient and Public ContributionAn online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic.

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What do we know about patients’ perspectives and expectations relating to palliative and end-of-life care in advanced liver disease? A systematic review of qualitative literature using ENTREQ guidelines

Cited by 6 publications

References 29 publications

Barriers to palliative care in hepatocellular carcinoma: A review of the literature

Barriers to palliative care in hepatocellular carcinoma: A review of the literature

Coping with Multiple Chronic Conditions in the Family Context: A Meta-Synthesis

The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis

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