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

Autor: Lea Ladegaard Grønkjær, Mette Munk Lauridsen
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