Evidence map›Paper›PMID 42548005›Full record

ArticleLiver international : official journal of the International Association for the Study of the Liver2026

Fatigue and Cognitive Impairment in Adults With Primary Sclerosing Cholangitis: Results From Concept Elicitation Interviews.

Donna M Evon, Kaya Merkler, Laura Mkumba, Nicole Lucas, Lauren Wright, Joanne Hatchett, Rachel Gomel, Patrick J Smith, Sasha Deutsch-Link, Christopher L Bowlus and 2 more

Abstract read
In one paragraph

Article in Liver international : official journal of the International Association for the Study of the Liver, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Psychometric evaluation of PROMISQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
  2. 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 · 2026
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Donna M EvonDivision of Gastroenterology and Hepatology, University of North Carolina, Chapel Hill, North Carolina, USA.ORCID 0000-0002-1414-1846
Kaya MerklerCenter for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Laura MkumbaDepartment of Population Sciences, Duke University School of Medicine Durham, Durham, North Carolina, USA.
Nicole LucasDepartment of Population Sciences, Duke University School of Medicine Durham, Durham, North Carolina, USA.ORCID 0000-0002-6326-4922
Lauren WrightDepartment of Population Sciences, Duke University School of Medicine Durham, Durham, North Carolina, USA.
Joanne HatchettPSC Partners Seeking a Cure, Greenwood Village, Colorado, USA.ORCID 0009-0002-4326-8720
Rachel GomelPSC Partners Seeking a Cure, Greenwood Village, Colorado, USA.ORCID 0009-0007-5111-4568
Patrick J SmithDepartment of Psychiatry, University of North Carolina, Chapel Hill, North Carolina, USA.
Sasha Deutsch-LinkDivision of Gastroenterology and Hepatology, University of North Carolina, Chapel Hill, North Carolina, USA.ORCID 0000-0002-0923-4300
Christopher L BowlusDivision of Gastroenterology and Hepatology, University of California Davis School of Medicine, Sacramento, California, USA.ORCID 0000-0002-3906-6811
Mark G SwainDepartment of Medicine, Liver Unit, University of Calgary, Calgary, Alberta, Canada.ORCID 0000-0002-0919-4468
Bryce B ReeveDepartment of Population Sciences, Duke University School of Medicine Durham, Durham, North Carolina, USA.ORCID 0000-0002-6709-8714

Funding

The Vanderbilt Institute for Clinical and Translational Research (VICTR)UL1TR000445 · NCATS · VANDERBILT UNIVERSITY MEDICAL CENTER · PI BERNARD, GORDON RAPHAEL · 2012 to 2016
$41.4M
North Carolina Translational and Clinical Sciences Institute (NC TraCS)UM1TR004406 · NCATS · UNIV OF NORTH CAROLINA CHAPEL HILL · PI NICHOLAS J SHAHEEN · 2023 to 2026
$37.5M
PILOT AND FEASIBILITY STUDIESP30DK034987 · NIDDK · UNIV OF NORTH CAROLINA CHAPEL HILL · PI ROBERT S. SANDLER · 1985 to 2026
$30.5M
NCATS NIH HHS UL1 TR000445NCATS NIH HHS UM1 TR004406NIDDK NIH HHS P30 DK034987NIH HHS DK034987NIH HHS UL1 TR000445NIH HHS UM1TR004406
6 · The paper itself

Abstract

BACKGROUND AND

aimsTo understand the experience of fatigue and cognitive impairment in adults with symptomatic primary sclerosing cholangitis (PSC) as an essential first step towards developing PSC-specific symptom measures.

methodsPurposeful sampling was used to identify 17 symptomatic adults from the PSC Symptom Assessment Project who met general trial eligibility criteria for in-depth concept elicitation interviews focused on key PSC symptoms. Of these, twelve were interviewed in-depth about fatigue and eleven about cognitive impairment. Interviews were conducted virtually, audio-recorded, transcribed and analysed. The Theory of Unpleasant Symptoms guided the development of a PSC symptom conceptual framework.

resultsParticipants were on average 42 years old, 57% male, 71% White and 57% had inflammatory bowel disease. Half experienced fatigue and cognitive impairment daily, while others described varying frequencies of these symptoms. Most participants described fatigue getting progressively worse throughout the day, often requiring naps. Fatigue interfered with domestic duties, job responsibilities and family/social activities. Fatigue impacted mental health with frustration, sadness and guilt. Participants with cognitive impairment reported it ranged from mild to severe, with some unable to live independently or maintain employment. Working memory, verbal fluency, attention and processing speed were impacted. Fatigue and cognitive impairment frequently co-occurred but could occur separately.

conclusionsPSC-related fatigue and cognitive impairment impact daily, work-related, emotional and social functioning in symptomatic adults. These qualitative findings inform the customization of PSC-specific fatigue and cognitive function measures with strong content validity that is necessary for use in PSC research and clinical trials.

Indexed as

Cholangitis, SclerosingCognitive DysfunctionFatigueAdultFemaleHumansInterviews as TopicMaleMiddle AgedQuality of LifeSymptom Burdenpatient‐reported outcomequalitativequality of lifesurveysymptom

Identifiers

PMID42548005
PMCPMC13433825

What Socratic holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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 Socratic graph.