Evidence map›Paper›PMID 42622900›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026

Design and evaluation of PROMIS

Donna M Evon, Laura Mkumba, Nicole Lucas, Li Lin, Lauren Wright, Kaya Merkler, Rachel Ciaves Gomel, Ricky Safer, Kallie Maloney, Christopher L Bowlus and 1 more

Abstract read
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In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper 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
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

11 authors.

Donna M EvonDivision of Gastroenterology and Hepatology, University of North Carolina, Burnett-Womack Building CB #7584, Chapel Hill, NC, 27599, USA. Donna_evon@med.unc.edu.ORCID http://orcid.org/0000-0002-1414-1846
Laura MkumbaCenter for Health Measurement, Department of Population Sciences, Duke University School of Medicine, Durham, NC, USA.
Nicole LucasCenter for Health Measurement, Department of Population Sciences, Duke University School of Medicine, Durham, NC, USA.ORCID http://orcid.org/0000-0002-6326-4922
Li LinCenter for Health Measurement, Department of Population Sciences, Duke University School of Medicine, Durham, NC, USA.
Lauren WrightCenter for Health Measurement, Department of Population Sciences, Duke University School of Medicine, Durham, NC, USA.
Kaya MerklerCenter for Gastrointestinal Biology and Disease, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Rachel Ciaves GomelPSC Partners Seeking a Cure, Greenwood Village, CO, USA.ORCID http://orcid.org/0009-0007-5111-4568
Ricky SaferPSC Partners Seeking a Cure, Greenwood Village, CO, USA.ORCID http://orcid.org/0000-0002-3906-6811
Kallie MaloneyDepartment of Psychiatry, University of North Carolina, Chapel Hill, NC, USA.
Christopher L BowlusDivision of Gastroenterology and Hepatology, University of California Davis School of Medicine, Sacramento, CA, USA.
Bryce B ReeveCenter for Health Measurement, Department of Population Sciences, Duke University School of Medicine, Durham, NC, USA.ORCID http://orcid.org/0000-0002-6709-8714

Funding

NIDDK NIH HHS DK034987
6 · The paper itself

Abstract

purposeThe goal of the Primary Sclerosing Cholangitis Symptom Assessment Project (PSC-SAP) is to develop reliable and valid PSC symptom measures for use in clinical trials. This article describes the process for customizing PROMIS

methodsRelevant items from the PROMIS item banks were selected by matching findings from concept elicitation interviews. Participants were purposively selected for cognitive interviews if they were symptomatic with PSC-related fatigue or cognitive impairment and met general eligibility for PSC clinical trials. Interviews were recorded, transcribed, and coded. The precision of these PROMIS short forms for PSC to capture fatigue and cognitive function at different levels was analyzed.

resultsParticipants' (n = 22) open-ended descriptions of fatigue and cognitive impairment were consistent with prior concept elicitation interviews. From the 95-item PROMIS Fatigue item bank, 13 items were selected that directly aligned with fatigue concepts described during concept elicitation. Data from the cognitive interviews confirmed that both measures possessed strong content validity, with items perceived as clear, relevant, and comprehensive. The PROMIS Fatigue Short Form-PSC exceeded the 0.90 reliability threshold for T-scores between 36 and 79; the PROMIS Cognitive Function Short Form-PSC exceeded the 0.90 threshold between T-scores of approximately 22 and 60.

conclusionThis study demonstrated the strength of PROMIS item banks to design PROMIS Fatigue and Cognitive Function short forms for adults with PSC. Once the psychometric properties of the PROMIS short forms are confirmed, these measures may be used to evaluate symptoms in PSC research and clinical trials.

Indexed as

Cholangitis, SclerosingCognitionFatigueQuality of LifeAdultAgedFemaleHumansInterviews as TopicMaleMiddle AgedPsychometricsReproducibility of ResultsSurveys and QuestionnairesSymptom BurdenLiver diseasePatient-reported outcomesQualitative interviewsSymptoms

Identifiers

PMID42622900

What OpenQuestion holds

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Registered trials

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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.