Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review

Background & Aims: In an attempt to uncover unmet patient needs, this review aims to synthesise quantitative and qualitative studies on patients’ quality of life and their experience of having liver disease. Methods: Three databases (CINAHL, Embase, and PubMed) were searched from January 200...

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Autores principales: Lea Ladegaard Grønkjær, Mette Munk Lauridsen
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Lenguaje:EN
Publicado: Elsevier 2021
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Acceso en línea:https://doaj.org/article/0a17299fbb4048af8fea1bad64e8de39
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spelling oai:doaj.org-article:0a17299fbb4048af8fea1bad64e8de392021-11-20T05:11:59ZQuality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review2589-555910.1016/j.jhepr.2021.100370https://doaj.org/article/0a17299fbb4048af8fea1bad64e8de392021-12-01T00:00:00Zhttp://www.sciencedirect.com/science/article/pii/S2589555921001464https://doaj.org/toc/2589-5559Background & Aims: In an attempt to uncover unmet patient needs, this review aims to synthesise quantitative and qualitative studies on patients’ quality of life and their experience of having liver disease. Methods: Three databases (CINAHL, Embase, and PubMed) were searched from January 2000 to October 2020. The methodological quality and data extraction of both quantitative and qualitative studies were screened and appraised using Joanna Briggs Institute instruments for mixed-method systematic reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A convergent, integrated approach to synthesis and integration was used. Studies including patients with autoimmune and cholestatic liver disease, chronic hepatitis B and C, non-alcoholic fatty liver disease and non-alcoholic steatohepatitis, cirrhosis, and hepatocellular carcinoma were considered. Results: The searches produced 5,601 articles, of which 95 (79 quantitative and 16 qualitative) were included in the review. These represented studies from 26 countries and a sample of 37,283 patients. The studies showed that patients´ quality of life was reduced. Unmet needs for information and support and perceived stigmatisation severely affected patients’ quality of life. Conclusions: Our study suggests changes to improve quality of life. According to patients, this could be achieved by providing better education and information, being aware of patients’ need for support, and raising awareness of liver disease among the general population to reduce misconceptions and stigmatisation. Registration number: PROSPERO CRD42020173501. Lay summary: Regardless of aetiology, patients with liver diseases have impaired quality of life. This is associated with disease progression, the presence of symptoms, treatment response, and mental, physical, and social factors such as anxiety, confusion, comorbidities, and fatigue, as well as limitations in daily living, including loneliness, low income, stigmatisation, and treatment costs. Patients highlighted the need for information to understand and manage liver disease, and awareness and support from healthcare professionals to better cope with the disease. In addition, there is a need to raise awareness of liver diseases in the general population to reduce negative preconceptions and stigmatisation.Lea Ladegaard GrønkjærMette Munk LauridsenElsevierarticleLiver diseaseMixed methodPatient experiencePatient reported outcomesQuality of lifeSystematic reviewDiseases of the digestive system. GastroenterologyRC799-869ENJHEP Reports, Vol 3, Iss 6, Pp 100370- (2021)
institution DOAJ
collection DOAJ
language EN
topic Liver disease
Mixed method
Patient experience
Patient reported outcomes
Quality of life
Systematic review
Diseases of the digestive system. Gastroenterology
RC799-869
spellingShingle Liver disease
Mixed method
Patient experience
Patient reported outcomes
Quality of life
Systematic review
Diseases of the digestive system. Gastroenterology
RC799-869
Lea Ladegaard Grønkjær
Mette Munk Lauridsen
Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review
description Background & Aims: In an attempt to uncover unmet patient needs, this review aims to synthesise quantitative and qualitative studies on patients’ quality of life and their experience of having liver disease. Methods: Three databases (CINAHL, Embase, and PubMed) were searched from January 2000 to October 2020. The methodological quality and data extraction of both quantitative and qualitative studies were screened and appraised using Joanna Briggs Institute instruments for mixed-method systematic reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A convergent, integrated approach to synthesis and integration was used. Studies including patients with autoimmune and cholestatic liver disease, chronic hepatitis B and C, non-alcoholic fatty liver disease and non-alcoholic steatohepatitis, cirrhosis, and hepatocellular carcinoma were considered. Results: The searches produced 5,601 articles, of which 95 (79 quantitative and 16 qualitative) were included in the review. These represented studies from 26 countries and a sample of 37,283 patients. The studies showed that patients´ quality of life was reduced. Unmet needs for information and support and perceived stigmatisation severely affected patients’ quality of life. Conclusions: Our study suggests changes to improve quality of life. According to patients, this could be achieved by providing better education and information, being aware of patients’ need for support, and raising awareness of liver disease among the general population to reduce misconceptions and stigmatisation. Registration number: PROSPERO CRD42020173501. Lay summary: Regardless of aetiology, patients with liver diseases have impaired quality of life. This is associated with disease progression, the presence of symptoms, treatment response, and mental, physical, and social factors such as anxiety, confusion, comorbidities, and fatigue, as well as limitations in daily living, including loneliness, low income, stigmatisation, and treatment costs. Patients highlighted the need for information to understand and manage liver disease, and awareness and support from healthcare professionals to better cope with the disease. In addition, there is a need to raise awareness of liver diseases in the general population to reduce negative preconceptions and stigmatisation.
format article
author Lea Ladegaard Grønkjær
Mette Munk Lauridsen
author_facet Lea Ladegaard Grønkjær
Mette Munk Lauridsen
author_sort Lea Ladegaard Grønkjær
title Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review
title_short Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review
title_full Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review
title_fullStr Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review
title_full_unstemmed Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review
title_sort quality of life and unmet needs in patients with chronic liver disease: a mixed-method systematic review
publisher Elsevier
publishDate 2021
url https://doaj.org/article/0a17299fbb4048af8fea1bad64e8de39
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