Evidence map›Paper›PMID 41678299›Full record

ArticleHepatology communications2026

A multinational survey assessing the impact and burden of pruritus on patients with primary sclerosing cholangitis.

Kris V Kowdley, Ricky Safer, Rachel Gomel, Joanne Hatchett, Martine Walmsley, Julio Burman, Sindee Weinbaum, Kerrie Goldsmith, Tiago Nunes, Jolan Terner-Rosenthal and 3 more

Abstract readMulticenter Study
In one paragraph

Article in Hepatology communications, 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. 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

13 authors.

Kris V KowdleyLiver Institute Northwest, Seattle, Washington, USA.ORCID 0000-0002-8553-3652
Ricky SaferPSC Partners Seeking a Cure, Greenwood Village, Colorado, USA.
Rachel GomelPSC Partners Seeking a Cure, Greenwood Village, Colorado, USA.
Joanne HatchettPSC Partners Seeking a Cure, Greenwood Village, Colorado, USA.
Martine WalmsleyPSC Support, Oxford, UK.
Julio BurmanHetz: The Israeli Association for the Health of the Liver, Ramat Gan, Israel.
Sindee WeinbaumHetz: The Israeli Association for the Health of the Liver, Ramat Gan, Israel.
Kerrie GoldsmithPSC Support Australia Inc., Melbourne, Australia.
Tiago NunesMirum Pharmaceuticals, Inc., Foster City, California, USA.ORCID 0000-0003-2134-4171
Jolan Terner-RosenthalMirum Pharmaceuticals, Inc., Foster City, California, USA.ORCID 0009-0008-0315-3383
Will GarnerMirum Pharmaceuticals, Inc., Foster City, California, USA.ORCID 0000-0003-0738-8696
Andrew McKibbenMirum Pharmaceuticals, Inc., Foster City, California, USA.ORCID 0009-0006-7206-6676
Pamela VigMirum Pharmaceuticals, Inc., Foster City, California, USA.ORCID 0009-0000-4226-5435

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPruritus is a common primary sclerosing cholangitis (PSC) symptom that greatly impacts quality of life (QoL; sleep, fatigue) and, in severe cases, may be an indication for liver transplantation. Currently, there are no effective pruritus treatments for PSC. This survey focuses on the presentation/severity of pruritus in PSC and on the participants' perspective of the broader burden on QoL.

methodsA multinational survey was conducted over 8 months with individuals diagnosed with PSC. A 36-item questionnaire focused on the pruritus severity scale (0, no itch; 10, worst itch imaginable) and impact on QoL was posted on approved websites; data were collected anonymously and analyzed using descriptive statistics.

resultsOf the 482 respondents, 91% and 34% had experienced and were currently experiencing pruritus, respectively. The median worst pruritus score was 6, and 45% (74 of 164) reported the pruritus episode lasted ≥1 month. Pruritus was associated with a higher degree of sleep disturbance and worsening fatigue. In half of those who reported pruritus, the symptom led to disruption of daily activities. Twenty-two percent of participants reported missing work or school. Pruritus negatively impacted mood changes in >50% of respondents. Most commonly used pruritus treatments were antihistamines, ursodeoxycholic acid, cholestyramine, topical creams/ointments, and rifampin. Forty-nine percent reported using ≥2 medications, and of those, 75% experienced "only partial" or "no relief."

conclusionsCholestatic pruritus in PSC has a major adverse impact on QoL, interferes with daily activities, and is inadequately treated in the majority of respondents. These unmet needs highlight the importance of developing safe/effective antipruritic treatments for PSC.

Indexed as

Cholangitis, SclerosingCost of IllnessPruritusQuality of LifeAdultAgedFatigueFemaleHumansMaleMiddle AgedSeverity of Illness IndexSleep Wake DisordersSurveys and QuestionnairesSymptom BurdenYoung Adultburdencholestatic liver diseaseitchPSCquality of life (QoL)

Identifiers

PMID41678299
PMCPMC13671585

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.