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

Abstract

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.

Keywords: CLDQ, Chronic Liver Disease Questionnaire; EQ-5D, European Quality of Life; FACT-Hep, Functional Assessment of Cancer Therapy Hepatobiliary Carcinoma; HBQOL, Hepatitis B Quality of Life; HCC, hepatocellular carcinoma; JBI, Joanna Briggs Institute; LC-PROM, Liver Cirrhosis Patient Reported Outcome Measure; LDQOL, Liver Disease Quality of Life; Liver disease; MELD, model for end-stage liver disease; Mixed method; NAFLD, non-alcoholic fatty liver disease; NASH, non-alcoholic steatohepatitis; PBC, Primary Biliary Cholangitis Questionnaire; Patient experience; Patient reported outcomes; PedsQL, Pediatric Quality of Life Inventory; Quality of life; SF, Short Form; SIP, Sickness Impact Profile; Systematic review; Unmet needs; VAS, visual analogue scale; WHOQOL-BREF, WHO Quality of Life.

Graphical abstract

Fig. 1

Flowchart of the review process.

Fig. 2

Conceptual model on the impact of liver disease on patients’ quality of life.