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Table 3 Study characteristics for Review Question B

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

Factor(s) correlated with QoL?

Outcome measure(s)

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) Age, (2) small/large duct PSC, (3) comorbid illness, (4) serum ALP

(1) Medical outcomes study 36-item short form survey†

(2) Chronic liver disease questionnaire†

(2) Fatigue impact scale

(3) Hospital anxiety and depression 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) Age, (2) gender, (3) marital status, (4) employment status, (5) symptoms, (6) history of decompensation

(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)

Gotthardt 2014

Germany

*

Cross-sectional

113

72%

44

63%

Mayo Risk score: low = 42%, intermediate = 22%, high = 4%. Data not reported for 35 participants

Tertiary care centre (University Hospital of Heidelberg)

(1) Age, (2) gender, (3) IBD status, (4) dominant stenosis, (5) Mayo risk score, (6) itch

(1) Medical outcomes study 36-item short form survey†

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) Age, (2) gender, (3) symptoms

(1) 15D instrument†

Kempinska-Podhorodecka 2017

Poland

**

Cross-sectional

267

66%

55‡

NR

Median ALP = 354 U/L

Two medical centres in Poland

(1) Vitamin D receptor polymorphisms

(1) Medical outcomes study 36-item short form survey†

(2) PBC-40†

(3) PBC-27†

Raszeja-Wyszomirska 2015a

Poland

*

Cross-sectional

33

67%

35

61%

Cirrhosis = 7%,

Mean ALP = 239 U/L

A single tertiary centre

(1) Fragility fractures

(1) Medical outcomes study 36-item short form survey†

(2) PBC-40†

(3) PBC-27†

Raszeja-Wyszomirska 2015b

Poland

*

Cross-sectional

102

72%

36

72%

Cirrhosis = 33%

A medical institution in Warsaw, Poland

(1) Age, (2) gender, (c) cirrhosis, (d) IBD status

(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) Child’s-Pugh class

(1) Sickness Impact Profile†

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) Serum autotaxin

(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) Age, (2) bilirubin, (3) Child’s-Pugh class

(1) Medical outcomes study 36-item short form survey†

(2) Chronic liver disease questionnaire†

  1. IBD inflammatory bowel disease, NR not reported, ALP alkaline phosphatase
  2. ◊Low quality = *, Moderate quality = **, High quality = ***. †Multi-dimensional quality of life questionnaire. ¥Value based on whole sample (including other disease groups). ‡ Median value