Evidence map›Paper›PMID 40492174›Full record

ArticleFrontiers in neurology2025

Psychometric analysis of the patient-reported outcomes measurement information system parent proxy physical function-upper extremity item bank for children with Duchenne muscular dystrophy.

Linda Pax Lowes, Corinne M Le Reun, Teofil Ciobanu, Lindsay N Alfano, Natalie F Reash, Megan A Iammarino, Shivangi Patel, Ivana F Audhya

Abstract read
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Article in Frontiers in neurology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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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

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3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

8 authors.

Linda Pax LowesCenter for Gene Therapy, Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, United States.
Corinne M Le ReunBiostatistics, Sainte-Anne, Guadeloupe, France.
Teofil CiobanuF. Hoffmann-La Roche Ltd., Basel, Switzerland.
Lindsay N AlfanoCenter for Gene Therapy, Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, United States.
Natalie F ReashCenter for Gene Therapy, Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, United States.
Megan A IammarinoCenter for Gene Therapy, Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, United States.
Shivangi PatelPatient-Centered Outcomes, Sarepta Therapeutics, Inc., Cambridge, MA, United States.
Ivana F AudhyaPatient-Centered Outcomes, Sarepta Therapeutics, Inc., Cambridge, MA, United States.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: The Patient-Reported Outcomes Measurement Information System (PROMIS) is a collection of generic patient-reported outcome instruments used to quantify disease impact on a variety of functional subdomains, including physical, cognitive, emotional, and other domains. The reliability and validity of the PROMIS Parent Proxy (PP) Physical Function-Upper Extremity (UE) item bank is not established in children with Duchenne muscular dystrophy (DMD). This study evaluated the psychometric properties and measurement quality of the PROMIS PP UE item bank v1.0 (29 items) in DMD using a Rasch psychometric analysis. Methods: The PROMIS PP UE item bank was completed by caregivers of children with DMD aged at least 8 years, under care at Nationwide Children's Hospital (Columbus, OH, United States). Rasch analysis was used to evaluate the psychometric performance of the measure and its items in DMD, based on several criteria, including item-trait interaction, individual items fit, Person Separation Index (PSI), individual persons fit, and response dependency. Results: Rasch analysis was conducted on 206 observations. Several items had weak clinical utility in measuring upper extremity functioning in DMD. Additionally, the analysis identified specific response options that could be restructured to improve the reliability and precision of the items in evaluating upper extremity function in DMD. A new customized 21-item measure demonstrated overall good fit to Rasch model expectations ( Conclusion: The customized PROMIS PP UE measure conformed to Rasch assumptions, indicating that it can serve as a reliable option for caregiver-reported upper extremity assessment in DMD.

Indexed as

disabilityneuromuscularpatient-reported outcome measurespsychometricsquality of lifevalidity

Identifiers

PMID40492174
PMCPMC12146635

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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.