SynthesisHealth and quality of life outcomes2021
Quality of life in primary sclerosing cholangitis: a systematic review.
Synthesis in Health and quality of life outcomes, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
8 citing papers in PubMed, 15 citations in OpenAlex.
- Psychometric evaluation of PROMISQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Quality of Life in Patients With Primary Sclerosing Cholangitis.Gastro hep advances · 2026Article
- Quantitative MRCP as Part of Primary Sclerosing Cholangitis Standard of Care in the National Health Service in England: A Feasibility Assessment Among Hepatologists.Healthcare (Basel, Switzerland) · 2025Article
- Patient Reported Outcomes in Primary Sclerosing Cholangitis: An Australian Perspective.Alimentary pharmacology & therapeutics · 2025Observational
- Association between non-invasive biomarkers and quality of life in Primary Sclerosing Cholangitis.PloS one · 2025Article
- Caregiver-reported symptom burden and preferences for therapeutic goals in pediatric primary sclerosing cholangitis.Journal of pediatric gastroenterology and nutrition · 2024Article
- An 'Adaptive Treatment Strategy' for Oral Vancomycin in Patients with the Orphan Disease Primary Sclerosing Cholangitis.Digestive diseases and sciences · 2024Review
- Quality of life (QoL) for people with primary sclerosing cholangitis (PSC): a pragmatic strategy for identifying relevant QoL issues for rare disease.Journal of patient-reported outcomes · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundPrimary 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?.
methodsWe systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists.
resultsWe 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.
conclusionThe 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.