Evidence map›Paper›PMID 39808799›Full record

ArticleBlood2025

Development of the Lee Symptom Scale-Skin Sclerosis for chronic GVHD-associated sclerosis.

Emily Baumrin, Joseph Pidala, Sandra A Mitchell, Lynn Onstad, Stephanie J Lee

Abstract read
In one paragraph

Article in Blood, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–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

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Guideline
  2. Chronic graft-versus-host disease.Nature reviews. Disease primers · 2026
    Review
  3. Review
  4. Review
  5. Observational
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

5 authors.

Emily BaumrinDepartment of Dermatology, University of Pennsylvania, Philadelphia, PA.ORCID 0000-0003-0396-2005
Joseph PidalaDepartment of Blood and Marrow Transplantation and Cellular Immunotherapy, Moffitt Cancer Center and Research Institute, Tampa, FL.
Sandra A MitchellDivision of Cancer Control and Population Sciences, Outcomes Research Branch, Healthcare Delivery Research Program, National Cancer Institute, Rockville, MD.ORCID 0000-0002-4153-9972
Lynn OnstadClinical Research Division, Fred Hutchinson Cancer Center and Department of Medicine, University of Washington, Seattle, WA.ORCID 0000-0003-0039-7143
Stephanie J LeeClinical Research Division, Fred Hutchinson Cancer Center and Department of Medicine, University of Washington, Seattle, WA.ORCID 0000-0003-2600-6390

Funding

Study Design and Data AnalysisP30AR069589 · NIAMS · UNIVERSITY OF PENNSYLVANIA · PI Elizabeth Anne Grice · 2016 to 2026
$8.6M
Biologic correlatives of chronic GVHD onsetU01CA236229 · NCI · FRED HUTCHINSON CANCER RESEARCH CENTER · PI LEE, STEPHANIE J · 2019 to 2023
$3.9M
NCI NIH HHS U01 CA236229NIAMS NIH HHS P30 AR069589
6 · The paper itself

Abstract

abstractSclerosis is a highly morbid manifestation of chronic graft-versus-host disease (cGVHD), associated with distressing symptoms and significant long-term disability. A patient-reported outcome (PRO) measure for cGVHD-associated sclerosis is essential to advance therapeutic trials. We aimed to develop a PRO for adults with cGVHD-associated sclerosis and evaluate and refine its content validity. Adults aged ≥18 years with cGVHD-associated sclerosis participated in semistructured interviews to identify salient symptoms and functions. Sclerosis-relevant symptoms and functions from existing PROs were also used to prompt discussion of topics not spontaneously mentioned. Symptoms and functions (subcodes) of importance were clustered and mapped to overarching domains (codes) using inductive analysis, and candidate items were developed. Cognitive interviews were used to evaluate content validity of the items, response options, recall period, and respondent instructions. Thirty-six open-ended interviews, conducted to saturation, revealed the breadth of the patient experience with cGVHD-associated sclerosis including 5 overarching domains: (1) skin changes, (2) symptoms, (3) emotional and social functioning, (4) mobility restrictions, and (5) activity limitations. A pool of 54 items was tested and iteratively refined through cognitive debriefing interviews (n = 25). Phrasing changes were made to improve relevance and comprehension. One item was removed, and 2 items were added to address respondent feedback, resulting in 55 items. Results support the relevance, comprehensibility, and comprehensiveness of the provisional Lee Symptom Scale-Skin Sclerosis. Concept elicitation and cognitive interviewing have informed the development of the Lee Symptom Scale-Skin Sclerosis. Psychometric testing and determination of minimal clinically important differences are underway in an external cohort to validate the PROs.

Indexed as

Graft vs Host DiseasePatient Reported Outcome MeasuresSkin DiseasesAdultAgedChronic DiseaseFemaleHumansMaleMiddle AgedSclerosisYoung Adult

Identifiers

PMID39808799
PMCPMC11952005

What OpenQuestion holds

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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 OpenQuestion graph.