A Comparison Between The Health-Related Quality Of Life Reported By The General Population And By Patients With Major Liver Diseases

Abstract

A369 on HRQoL of the general population is still lacking. The aim of our study was to fill this GAP. Methods: A dataset with HRQoL data of a representative sample of the general population of most populated Italian region was matched with the dataset from a multicenter study conducted in the same region and time period to generate and validate a set of health care outcomes indicators for the major LDs (hepatitis B (HBV), hepatitis C (HCV), compensated cirrhosis (CC), decompensated cirrhosis (DC), hepatocellular carcinoma (HCC), autoimmune hepatitis (AIH), primary biliary cirrhosis (PBC), primary sclerosing cholangitis (PSC), NAFLD/ NASH and patients listed for liver transplant (LTL)). Within both datasets, HRQoL data were collected using the EQ-5D-3L. Multivariate logistic and Tobit regressions were then performed adjusting for possible confounders (age, sex, education and working status). Results: A total of 6,800 "healthy subjects" and 3,105 subjects with LDs were included in the analyses. Multivariate logistic analyses showed that DC, HCC, and LTL had significantly (p< 0.05) higher risk to have problems in mobility, self-care, and usual activities compared to "healthy subjects". AIH had significantly higher risk to have problems in self-care; while HCV, CC, DC, and NAFLD/NASH in Anxiety/depression. Similar results were obtained with the Tobit model performed using VAS and Utility-index. DC, HCC, AIH and LTL reported the highest decrease in VAS and Utility score. ConClusions: HRQoL decreased in advanced LDs (DC, HCC, LTL) and AIH. This study provides an actual true estimate of the impact of major LDs on the patients' HRQoL compare to the general population, and therefore is a key tool for decision-making in care delivery for liver diseases.

Health-related quality of life and patient-reported outcome measures in NASH-related cirrhosis

“…The majority of studies (data sources) were conducted in the USA (n = 18, 58%), no more than 3 studies were conducted in any other country and in total; studies were conducted in 8 different mainly Western countries. Nine studies were specifically aimed at determining HRQoL 14,25,[27][28][29][30][31][32][33] ; 13 studies were focussed on specific related symptoms such as varices, pain or overall physical/mental symptoms [34][35][36][37][38][39][40][41][42][43][44] ; 2 were case studies each describing the experience of a single patient 45,46 ; 3 studies were concerned with PROM development and validation. [47][48][49] Within the identified studies, 1 was an opinion piece 50 ; 5 were conference abstracts 32,33,[42][43][44] and 5 were patient blogs/ stories.…”

“…Nine studies were specifically aimed at determining HRQoL 14,25,[27][28][29][30][31][32][33] ; 13 studies were focussed on specific related symptoms such as varices, pain or overall physical/mental symptoms [34][35][36][37][38][39][40][41][42][43][44] ; 2 were case studies each describing the experience of a single patient 45,46 ; 3 studies were concerned with PROM development and validation. [47][48][49] Within the identified studies, 1 was an opinion piece 50 ; 5 were conference abstracts 32,33,[42][43][44] and 5 were patient blogs/ stories. [51][52][53][54][55] The majority of the studies (n = 19) specifically identified the inclusion of NASH-cirrhosis patients, 14,[28][29][30]33,[35][36][37][38][39][40][41...…”

“…[47][48][49] Within the identified studies, 1 was an opinion piece 50 ; 5 were conference abstracts 32,33,[42][43][44] and 5 were patient blogs/ stories. [51][52][53][54][55] The majority of the studies (n = 19) specifically identified the inclusion of NASH-cirrhosis patients, 14,[28][29][30]33,[35][36][37][38][39][40][41]43,45,46,49,51,55,56 4 studies were assumed to refer to NASH-cirrhosis-these studies grouped 'other' liver disease aetiologies as 1 group 32,34,43,47 ; the final 7 studies 25,42,48,50,52-54 only referred to their target group as 'cirrhosis patients'.…”

“…42 Compensated and decompensated patients In the studies that considered patients with compensated/ decompensated cirrhosis, using the EQ-5D-3L, it was reported that patients with decompensated cirrhosis had a higher risk of having problems with mobility, self-care and usual activities compared to 'healthy subjects'. 32 Edula et al (2014), in their case study of a patient with NASH-cirrhosis, asserted that bleeding from gastro-oesophageal varices 'can often present as a first decompensating event' 57 for patients with previously identified compensated disease. Patients with NASH-cirrhosis were also reported to be at risk of bleeding from varices (30/47 patients) in the Japanese study by Nakamura et al 58 Grey literature and blogs Findings from the grey literature blogs highlighted perspectives both from patients with NASH-cirrhosis (n = 3) and their spouse/ family members (n = 2).…”