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Table 2 Study characteristics for Review Question A

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)

Ã…berg 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%Â¥

41Â¥

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%Â¥

55Â¥

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†

  1. IBD inflammatory bowel disease, MELD Mayo end-stage liver disease score, NR not reported, ALP alkaline phosphatase
  2. ◊Low quality = *, Moderate quality = **, High quality = ***. †Multi-dimensional quality of life questionnaire. ††Comparator group age- and gender-matched to PSC group. ¥ Value based on whole sample (including other disease groups). ‡ Median value