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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2018

Open Access 01-12-2018 | Research

Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review

Authors: Fatima Isa, Grace M. Turner, Geetinder Kaur, Derek Kyte, Anita Slade, Tanya Pankhurst, Larissa Kerecuk, Thomas Keeley, James Ferguson, Melanie Calvert

Published in: Health and Quality of Life Outcomes | Issue 1/2018

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Abstract

Background

Primary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients’ to-date. The aim of the systematic review was to: (a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC.

Methods

A systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist.

Results

Thirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n = 15) and Chronic liver disease questionnaire (CLDQ) (n = 6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study.

Conclusion

A wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.
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Metadata
Title
Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review
Authors
Fatima Isa
Grace M. Turner
Geetinder Kaur
Derek Kyte
Anita Slade
Tanya Pankhurst
Larissa Kerecuk
Thomas Keeley
James Ferguson
Melanie Calvert
Publication date
01-12-2018
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2018
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-018-0951-6

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