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Supportive and palliative care in people with cirrhosis: international systematic review of the perspective of patients, family members and health professionals

Low, JTS; Rohde, G; Pittordou, K; Candy, B; Davis, S; Marshall, A; Stone, P; (2018) Supportive and palliative care in people with cirrhosis: international systematic review of the perspective of patients, family members and health professionals. Journal of Hepatology , 69 (6) pp. 1260-1273. 10.1016/j.jhep.2018.08.028. Green open access

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Abstract

BACKGROUND: People with cirrhosis have unmet needs, which could benefit from a palliative care approach. Developing effective services needs to be evidence based from those with personal experience. This review aims to explore; patient and family perspectives of perceived needs including communication; health professionals' perspectives on delivery of care and improving palliative care between specialities. METHODS: A literature search conducted in Medline, Embase and CINAHL using key words reporting on the perspectives of patients with liver cirrhosis (18 years and over), family members or health professionals on the provision of care in liver cirrhosis. Study quality was assessed using the Mixed Methods Appraisal Tool. Qualitative and quantitative findings were grouped together according to the main relevant themes identified. RESULTS: Nineteen research studies predominately from high income Western countries were identified, with a total sample consisting of 1413 patients, 31 family carers and 733 health professionals. Patient and family members had limited understanding about cirrhosis or its impact. They wanted better information about their disease, its treatment and help with psychological and practical needs. Health professionals had difficulty communicating about these issues to patients and their families. General Practitioners left care predominantly to the liver clinicians, who lacked confidence to have discussions about prognosis or future care preferences. The role of palliative care was recognised as important in caring for this group through earlier integration with liver and community services. CONCLUSIONS: Health professionals need support to improve their communication with patients to address their broader needs beyond medical treatment and to develop new models to improve palliative care coordination between different medical specialities. Future research should focus on developing communication aides, testing existing tools to identify suitable patients for supportive care and explore robust ways of evaluating supportive care interventions, with more studies needed from middle and low income countries. LAY SUMMARY: Patients and their families had poor understanding about advanced liver disease and about its impact on them. They need more information about the treatments they receive and how to get practical and psychological support. Liver doctors and GPs found it difficult to talk to patients and their families about the seriousness of advanced liver disease and the lack of healthcare options available to them if their condition gets worse. All doctors and nurses involved in the care of patients with advanced liver disease recognise that palliative and supportive care have an important role to help improve patient care. REGISTRATION NUMBER: PROSPERO CRD42017064770.

Type: Article
Title: Supportive and palliative care in people with cirrhosis: international systematic review of the perspective of patients, family members and health professionals
Location: Netherlands
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.jhep.2018.08.028
Publisher version: https://doi.org/10.1016/j.jhep.2018.08.028
Language: English
Additional information: © 2018 European Association for the Study of the Liver. Published by Elsevier B.V. This an Open Access article published under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (https://creativecommons.org/licenses/by-nc-nd/4.0/).
Keywords: cirrhosis, palliative care, supportive care, communication
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health
URI: https://discovery.ucl.ac.uk/id/eprint/10057231
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