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Health and Quality of Life Outcomes

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01-12-2021 | Chronic Inflammatory Bowel Disease | Review

Quality of life in primary sclerosing cholangitis: a systematic review

Authors: Elena Marcus, Paddy Stone, Anna-Maria Krooupa, Douglas Thorburn, Bella Vivat

Published in: Health and Quality of Life Outcomes | Issue 1/2021

Abstract

Background

Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?.

Methods

We systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists.

Results

We identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes.

Conclusion

The limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.

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Title: Quality of life in primary sclerosing cholangitis: a systematic review
Authors: Elena Marcus
Paddy Stone
Anna-Maria Krooupa
Douglas Thorburn
Bella Vivat
Publication date: 01-12-2021
Publisher: BioMed Central
Keywords: Chronic Inflammatory Bowel Disease
Primary Sclerosing Cholangitis
Fatigue
Published in: Health and Quality of Life Outcomes / Issue 1/2021
Electronic ISSN: 1477-7525
DOI: https://doi.org/10.1186/s12955-021-01739-3

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Quality of life in primary sclerosing cholangitis: a systematic review

Abstract

Background

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusion

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