From: Quality of life in primary sclerosing cholangitis: a systematic review
Study ID Country Qualityâ—Š | Study design | Sample size % Male | Age (mean) % IBD | PSC severity/stage | Recruitment setting | Comparator group(s) | Outcome measure(s) |
---|---|---|---|---|---|---|---|
Åberg 2012 Finland ** | Cross-sectional | 56 64% | 53 NR | NR (all post-transplant) | All liver transplant patients transplanted in Finland between 1982 and May 2007 | (1) Primary biliary cholangitis (2) Acute liver failure (3) Alcoholic cirrhosis (4) Liver tumour (5) Miscellaneous chronic liver disease group | (1) 15D instrument†|
Ananthakrishnan 2010 USA ** | Case–control | 26 81% | 41 100% | NR | Database from a tertiary IBD referral centre | (1) Inflammatory bowel disease††| (1) Short inflammatory bowel disease questionnaire†|
Benito de Valle 2012 Sweden, UK * | Cross-sectional | 182 70% | 50 79% | Cirrhosis = 8% Decompensated liver disease = 6% | Computerised discharge diagnosis register of all hospitals in one region (Sweden); all patients at the outpatient clinic of one hospital (UK) | (1) General population††| (1) Medical outcomes study 36-item short form survey†(2) Chronic liver disease questionnaire†(2) Fatigue impact scale (3) Hospital anxiety and depression scale |
Björnsson 2004 Sweden, UK ** | Cross-sectional | 93 65% | 48 80% | Cirrhosis: 5% Ludwig’s fibrosis score: Stage 1 = 44%, Stage 2 = 21%, Stage 3 = 30% | All patients at one outpatient clinic in the UK and one outpatient clinic in Sweden | (1) General population††(2) Inflammatory bowel disease | (1) Psychological wellbeing index (2) Beck depression inventory (3) Fatigue impact scale (4) Gastrointestinal symptoms rating scale |
Cheung 2016 Canada ** | Cross-sectional | 99 51% | 46 75% | Cirrhosis = 48% Decompensated liver disease = 16% Mean ALP: 243 U/L | Tertiary liver clinic in Canada (Toronto Centre for liver disease) | (1) Healthy controls (2) Inflammatory bowel disease (3) Primary biliary cholangitis (4) Non-autoimmune cholestatic liver disease | (1) Medical outcomes study 36-item short form survey†(2) Short inflammatory bowel disease questionnaire†(3) Liver disease quality of life questionnaire†(4) Patient health questionnaire-9 (depression) |
Dyson 2015 UK ** | Cross-sectional | 40 78% | 51 60% | Mean ALP: 275 U/L | All PSC patients under active follow-up at a regional liver centre in the UK | (1) Community controls (2) Inflammatory bowel disease††(3) Primary biliary cholangitis††| (1) Fatigue impact scale (2) Epworth sleepiness scale (3) Hospital anxiety and depression scale (4) Composite autonomic symptom scale |
Gorgun 2005 USA *** | Case–control | 65 69% | 43 100% | NR | Cleveland institutional review board-approved pelvic pouch database | (1) Inflammatory bowel disease | (1) Cleveland global quality of life questionnaire†|
Haapamäki 2015 Finland ** | Cross-sectional | 341 54% | 43 70% | Asymptomatic = 45% ERC-score mean (SD): 5.9 (3.4) | Tertiary referral centre (The Endoscopy Unit of Helsinki University Central Hospital) | (1) General population††(2) Inflammatory bowel disease††| (1) 15D instrument†|
Jones 2009 UK * | Cross-sectional | 73 NR | NR NR | NR | The Freeman Liver Unit, Newcastle Hospital | (1) Healthy controls (2) Primary biliary cholangitis (3) Chronic fatigue syndrome (4) Non-alcoholic fatty liver disease (5) Vasovagal syncope | (1) Fatigue impact scale |
Longworth 2003 UK ** | Cohort | 70 69% | 50‡ NR | NR (all listed for transplant) | Consecutive cohorts of patients listed for liver transplant at six UK centres | (1) General population††| (1) EuroQol EQ-5D instrument†|
Raszeja-Wyszomirska 2015b Poland * | Cross-sectional | 102 72% | 36 72% | Cirrhosis = 33% | A medical institution in Warsaw, Poland | (1) Healthy controls††| (1) Medical Outcomes Study 36-Item Short Form Survey†(2) PBC-40†(3) PBC-27†|
Tarter 1991 USA * | Cross-sectional | 52 42%¥ | 41¥ NR | Child–Pugh class: A = 49%, B = 38%, C = 14% | Presbyterian University Hospital of the University of Pittsburgh Health Sciences Center | (1) Laennec’s cirrhosis (2) Primary biliary cholangitis (3) Chronic active hepatitis (4) Hepatitis B (5) Hepatitis C (6) Cryptogenic cirrhosis (7) Alpha-1 antitrypsin deficiency | (1) Sickness impact profile†|
Tillman 2011 Germany * | Cross-sectional | 13 77% | 42 NR | NR | Tertiary liver referral centre (Hannover Medical School) | (1) Primary biliary cholangitis (2) Hepatitis B (3) Hepatitis C (4) Autoimmune hepatitis (5) Other liver conditions | (1) Medical outcomes study 36-item short form survey†(2) Fatigue impact scale |
Vannas 2020 Finland ** | Cohort | 48 67% | 45 NR | Symptomatic patients (n = 32): Median MELD score = 13 Asymptomatic patients (n = 16): Median MELD score = 7 | Transplantation and Liver Surgery Clinic (Helsinki University Hospital) and PSC follow-up registry (Helsinki University) | (1) General population††| (1) 15D instrument†|
van Os 2007 Netherlands * | Cross-sectional | 37 65% | 44 NR | Cirrhosis = 14%, mean ALP = 258 U/L | Outpatient liver unit of the Erasmus Medical Centre, Rotterdam | (1) Primary biliary cholangitis | (1) Beck depression inventory |
Wunsch 2016 Poland ** | Cross-sectional | 115 65% | 35 NR | Mean ALP = 299 U/L Child–Pugh class: A = 53%, B = 40%, C = 7% | Liver Unit (Pomeranian Medical University) and the Liver and Internal Medicine Unit (Medical University of Warsaw) | (1) Primary biliary cholangitis | (1) Medical outcomes study 36-item short form survey†(2) PBC-40†(3) PBC-27†|
Younossi 2000 USA * | Cross-sectional | 29 27%¥ | 55¥ NR | No cirrhosis = 36%¥ Child–Pugh class¥: A = 35%, B = 22%, C = 2% | NR | (1) Healthy controls (2) Primary biliary cholangitis (3) Chronic obstructive pulmonary disease (4) Congestive heart failure (5) Type II diabetes, | (1) Medical outcomes study 36-item short form survey†(2) Chronic liver disease questionnaire†|