ArticleHepatology communications2020
A Systematic Review of Patient-Reported Outcomes in Primary Biliary Cholangitis and Primary Sclerosing Cholangitis.
Article in Hepatology communications, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
17 citing papers in PubMed, 2 syntheses or guidelines pooled it, 18 citations in OpenAlex.
- Cholestatic Pruritus Treatments in Primary Biliary Cholangitis and Primary Sclerosing Cholangitis: A Systematic Literature Review.Digestive diseases and sciences · 2023Pooled it
- Quality of life in primary sclerosing cholangitis: a systematic review.Health and quality of life outcomes · 2021Pooled it
- Symptom burden is associated with health-related quality of life in symptomatic adults with primary sclerosing cholangitis.Hepatology communications · 2026Article
- Fatigue and Cognitive Impairment in Adults With Primary Sclerosing Cholangitis: Results From Concept Elicitation Interviews.Liver international : official journal of the International Association for the Study of the Liver · 2026Article
- Design and evaluation of PROMISQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- An Explainable AI Framework for Continuous Monitoring, Risk Stratification, and Clinical Decision Support in Primary Biliary Cholangitis: Protocol for a Multiphase Development and Validation Study.JMIR research protocols · 2026Article
- Current Treatment of Primary Biliary Cholangitis and Primary Sclerosing Cholangitis: A Comprehensive Review.The Turkish journal of gastroenterology : the official journal of Turkish Society of Gastroenterology · 2026Review
- From Isolation to Information: Launching an Online Community for Patients with Primary Sclerosing Cholangitis, Primary Biliary Cholangitis, and Autoimmune Hepatitis in Romania-A Descriptive Study.Healthcare (Basel, Switzerland) · 2025Article
- Impact of Metabolic Dysfunction-Associated Steatotic Liver Disease on Fatigue and Pruritus in Primary Sclerosing Cholangitis: A U.S. Single-Center Study.Journal of clinical medicine · 2025Article
- Assessment of PBC Pruritus From the ITCH-E Study: Quality of Life, Productivity, and Treatment Experiences.Liver international : official journal of the International Association for the Study of the Liver · 2025Article
- Validation of a Primary Biliary Cholangitis-Specific Version of Chronic Liver Disease Questionnaire: CLDQ-PBC.Clinical and translational gastroenterology · 2024Article
- Neuroimmune modulation in liver pathophysiology.Journal of neuroinflammation · 2024Review
- Total and individual PBC-40 scores are reliable for the assessment of health-related quality of life in Greek patients with primary biliary cholangitis.Journal of translational internal medicine · 2023Article
- Development of the Patient- and Observer-Reported PRUCISION Instruments to Assess Pruritus and Sleep Disturbance in Pediatric Patients with Cholestatic Liver Diseases.Advances in therapy · 2022Review
- Understanding fatigue in primary biliary cholangitis: From pathophysiology to treatment perspectives.World journal of hepatology · 2022Review
- The Role of B Cells and B Cell Therapies in Immune-Mediated Liver Diseases.Frontiers in immunology · 2021Review
- Consensus statements of the Hellenic Autoimmune Liver Diseases Study Group on the diagnosis and current management of primary biliary cholangitis.Annals of gastroenterologyArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 4 institutions in 1 country.
Funding
Abstract
Primary biliary cholangitis (PBC) and primary sclerosing cholangitis (PSC) are associated with decreased health-related quality of life and debilitating symptoms. These experiences can be defined as patient-reported outcome (PRO) concepts and measured using PRO instruments. We identified all PRO concepts and instruments used in the PBC and PSC literature. This systematic review identified PBC and/or PSC studies from January 1, 1990, to May 6, 2019, that measured at least one PRO concept. Study population, design, PRO concept, PRO instrument, and validation data for PRO instruments were investigated. We provided descriptive statistics of PRO concepts and instruments used, stratified by population type. Use of PRO concepts and instruments were assessed over time. The search yielded 318 articles (69% in PBC, 18% in PSC, 13% in both, and 24% in drug trials). Forty-nine unique PRO concepts were identified. The five most common PRO concepts included pruritus (25%), fatigue (19%), broad health-related quality of life (16%), gastrointestinal adverse events (6%), and physical adverse events (6%). Only 60% of PRO concepts were measured with a PRO instrument, most of which were nonvalidated visual analogue or numeric rating scales. Only three of 83 PRO instruments were developed with feedback from the target populations (one for PBC, one for PSC, and one for both), and only six documented any psychometric testing in the target populations. Use of PRO instruments increased over time from 30% in the 1990s to 67% by 2019.
Identifiers
What OpenQuestion holds
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.