Evidence map›Paper›PMID 40996336›Full record

ArticleRheumatology (Oxford, England)2026

PROMIS displays strong construct validity in pediatric and adult patients with idiopathic inflammatory myopathies.

Emma M Austenfeld, Sara E Sabbagh, Melodee Liegl, Ke Yan, Vy Do, Julie Fuller, Kelly Rouster-Stevens, Lisa G Rider, Adam Schiffenbauer

Abstract readValidation Study
In one paragraph

Article in Rheumatology (Oxford, England), 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. Review
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

9 authors.

Emma M AustenfeldDivision of Rheumatology, Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA.ORCID 0000-0002-6723-7358
Sara E SabbaghDivision of Rheumatology, Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA.ORCID 0000-0003-3176-9958
Melodee LieglDivision of Bioinformatics and Quantitative Child Health, Department of Pediatrics, Medical College of Wisconsin, WI, USA.
Ke YanDivision of Bioinformatics and Quantitative Child Health, Department of Pediatrics, Medical College of Wisconsin, WI, USA.ORCID 0000-0001-6599-4622
Vy DoTexas Scottish Rite Hospital for Children, Dallas, TX, USA.ORCID 0000-0002-4322-4413
Julie FullerTexas Scottish Rite Hospital for Children, Dallas, TX, USA.
Kelly Rouster-StevensDepartment of Pediatrics Rheumatology, Emory University School of Medicine & Children's Healthcare of Atlanta, Atlanta, GA, USA.ORCID 0000-0002-7855-9168
Lisa G RiderEnvironmental Autoimmunity Group, Clinical Research Branch, National Institute of Environmental Health Sciences, National Institutes of Health (NIH), Bethesda, MD, USA.ORCID 0000-0002-6912-2458
Adam SchiffenbauerEnvironmental Autoimmunity Group, Clinical Research Branch, National Institute of Environmental Health Sciences, National Institutes of Health (NIH), Bethesda, MD, USA.ORCID 0000-0001-9964-9966

Funding

Assessment, Therapy and Prevention Of Autoimmune DiseaseZIAES101081 · NIEHS · NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES · PI RIDER, LISA · 2009 to 2025
$17.6M
Institutional Career Development CoreKL2TR001438 · NCATS · MEDICAL COLLEGE OF WISCONSIN · PI WIDLANSKY, MICHAEL E · 2015 to 2024
$2.9M
Assessment, Therapy and Prevention Of Autoimmune DiseaseZ01ES101081 · NIEHS · NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES · PI MILLER, FREDERICK · 2002 to 2008
$2.2M
Intramural NIH HHS Z01 ES101081Intramural NIH HHS ZIA ES101081National Institute of Environmental Health Sciences of the National Institutes of Health ZIAES101081NCATS NIH HHS KL2 TR001438
6 · The paper itself

Abstract

objectivesWe assessed the validity of Patient-Reported Outcome Measurement Information System (PROMIS) for juvenile and adult-onset idiopathic inflammatory myopathies (JIIM/IIM) and determined associations with disease characteristics and assessments.

methodsPROMIS-49 or -57 questionnaires were completed by parents (n = 70) and pediatric (n = 49) or adult patients with IIM (n = 61). Construct validity was evaluated using legacy health-related quality of life (HRQoL) instruments and associations with disease assessments and clinical characteristics.

resultsAll groups reported decreased Physical Function (PF) (39.9-44.3, P < 0.001-0.002) compared with the reference population. All groups also reported significantly increased pain interference (49.6-55.8, P < 0.001), fatigue (49.5-55.1, P < 0.001-0.004) and anxiety (47.0-52.5, P < 0.001-0.043). PROMIS demonstrated excellent internal consistency (α > 0.9) and construct validity with legacy HRQoL instruments. Parents reported worse PF (39.7 vs 42.9, P < 0.001), more Fatigue (52.4 vs 48.5, P = 0.023) and higher Anxiety (49.6 vs 46.8, P = 0.032) than their children. PROMIS PF correlated best with disease activity measures (|r|=0.022-0.636), whereas Social Role, Anxiety and Depression correlated poorly with disease activity measures. Multiple PROMIS domains correlated with Patient and Parent Global Damage, but only parent PF correlated with Physician Global Damage (|r|=0.414). Several PROMIS domains had better correlations with disease assessments than the Medical Outcomes Study Short Form-36 (SF-36).

conclusionPROMIS offers a nuanced view of HRQoL that traditional disease assessments do not adequately capture. PROMIS has good construct validity and it may be more sensitive than legacy HRQoL measures. These findings support the incorporation of PROMIS into the assessment of IIM/JIIM to address comprehensive patient well-being.

Indexed as

MyositisPatient Reported Outcome MeasuresQuality of LifeAdolescentAdultAnxietyChildFatigueFemaleHumansMaleMiddle AgedParentsReproducibility of ResultsSeverity of Illness IndexSurveys and Questionnairesdermatomyositishealth-related quality of lifejuvenile dermatomyositismyositispatient-reported outcome measuresPROMIS

Identifiers

PMID40996336
PMCPMC13074380

What OpenQuestion holds

Textmetadata
LicenceTDM
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.