Table 2.
Summary of findings from studies included in the systematic review.
| Patients | Autoimmune or cholestatic liver disease | Chronic hepatitis B or C | NAFLD or NASH | Cirrhosis | HCC | |
|---|---|---|---|---|---|---|
| Quantitative studies | ||||||
| Quality of life total mean scores of patients with liver diseases across the included studies | ||||||
| Chronic Liver Disease Questionnaire (CLDQ) mean score | 5.5∗∗ | 4.1–5.8∗ | 4.9–5.6† | 4.3–5.3‡ | – | |
| European Quality of Life (EQ-5D) | Total mean score | 0.89∗∗ | 0.37–1.0† | 0.67∗∗ | – | – |
| Mean visual analogue scale (VAS) score | 80∗∗ | 57–85† | – | – | – | |
| Hepatitis B Quality of Life (HBQOL) mean score | – | 64.4–81.4# | – | – | – | |
| Short-Form (SF) different versions | Mental component summary | 40.1–66.7∗ | 43.0–51.3∗ | 39.2–49.5∗ | 41.0–45.3‡ | – |
| Physical component summary | 38.6–69.2∗ | 43.7–54.0∗ | 38.5–46.4∗ | 30.8–38.6‡ | – | |
| Functional Assessment of Cancer Therapy-Hepatobiliary Carcinoma (FACT-Hep) mean score | – | – | – | – | 74–126‡ | |
| Liver Cirrhosis Patient Reported Outcome Measure (LC-PROM) mean score | – | – | – | 189∗∗ | – | |
| Liver Disease Quality of Life (LDQOL) mean score | – | – | – | 55.3∗∗ | – | |
| Pediatric Quality of Life Inventory (PedsQL) mean score | 71.6–78.3‡ | 72.7–74.58# | – | – | ||
| Primary Biliary Cholangitis Questionnaire (PBC) mean score | 89.4∗∗ | – | – | – | – | |
| Sickness Impact Profile (SIP) mean score | – | – | – | 4.36∗∗ | – | |
| WHO Quality of Life (WHOQOL-BREF) mean score | – | 70.8∗∗ | – | – | – | |
| Studies not reporting total mean score but sub-scores for individual quality of life domains, number and % | 6 (35%) | 6 (21%) | 2 (15%) | 3 (21%) | 2 (28%) | |
| Studies reporting quality of life results in graphic, number and % | 3 (18%) | 3 (11%) | 0 (0%) | 2 (14%) | 1 (14%) | |
| Qualitative studies | ||||||
| Main findings from interviews | Patients felt de-legitimation of experiences. The disease resulted in an unreliable body, fatigue, planning a life to conserve energy, and struggling to maintain normality and emotional consequence. Patients missed support. | The diagnosis was a shock followed by disappointment and lack of support. Patients needed education and information to manage the disease. Patients had fear of rejection and stigma. Patients had Insufficient self-care due to limited knowledge. | Patients lacked information and knowledge on the disease. In addition, they lacked support to make lifestyle modifications. NASH had impact on patients’ social life and work performance. Patients experienced stigma. | Patients feared disease outcome and needed support to cope with the disease and treatment. They felt loneliness, loss of self and social isolation due to limits in daily living. They experienced negative preconceptions and stigma. | HCC was associated with physical symptoms and psychosocial stress. Patients’ were highly aware of changes and symptoms, but needed information and support to manage the disease. | |
Range of quality of life scores indicate minimum and maximum total mean score from studies using the questionnaire.
HCC, hepatocellular carcinoma; NAFLD, non-alcoholic fatty liver disease; NASH, non-alcoholic steatohepatitis.
∗
Indicates the use of the questionnaire in 5–9 studies.
†
Indicates the use of the questionnaire in 4 studies.
‡
Indicates the use of the questionnaire in 3 studies.
#
Indicates the use of the questionnaire in 2 studies.
∗∗
Indicates the use of the questionnaire in 1 study.