Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review
Autor: | Lea Ladegaard Grønkjær, Mette Munk Lauridsen |
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Jazyk: | angličtina |
Rok vydání: | 2021 |
Předmět: |
PBC
Primary Biliary Cholangitis Questionnaire Patient experience Quality of life medicine.medical_specialty NAFLD non-alcoholic fatty liver disease NASH non-alcoholic steatohepatitis VAS visual analogue scale Population EQ-5D European Quality of Life FACT-Hep Functional Assessment of Cancer Therapy Hepatobiliary Carcinoma HBQOL Hepatitis B Quality of Life Disease CINAHL RC799-869 Chronic liver disease SIP Sickness Impact Profile Unmet needs MELD model for end-stage liver disease Liver disease CLDQ Chronic Liver Disease Questionnaire LC-PROM Liver Cirrhosis Patient Reported Outcome Measure Quality of life (healthcare) Internal Medicine medicine Immunology and Allergy Intensive care medicine education PedsQL Pediatric Quality of Life Inventory Patient reported outcomes education.field_of_study Hepatology WHOQOL-BREF WHO Quality of Life business.industry JBI Joanna Briggs Institute Gastroenterology Diseases of the digestive system. Gastroenterology medicine.disease SF Short Form Mixed method Systematic review business HCC hepatocellular carcinoma Research Article LDQOL Liver Disease Quality of Life |
Zdroj: | JHEP Reports, Vol 3, Iss 6, Pp 100370-(2021) Grønkjær, L L & Lauridsen, M M 2021, ' Quality of life and unmet needs in patients with chronic liver disease : A mixed-method systematic review ', JHEP Reports, vol. 3, no. 6, 100370 . https://doi.org/10.1016/j.jhepr.2021.100370 JHEP Reports |
ISSN: | 2589-5559 |
DOI: | 10.1016/j.jhepr.2021.100370 |
Popis: | 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. Graphical abstract Highlights • Patients with liver disease regardless of aetiology and severity have impaired quality of life. • Patients call for better education and information to understand and manage their liver disease, and for increased awareness and support from healthcare professionals. • Owing to the limited knowledge of liver diseases among the general population, patients experience stigmatisation, resulting in loneliness and social isolation. • Addressing unmet needs of patients with liver disease could improve their quality of life. |
Databáze: | OpenAIRE |
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