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Performance of Upper Limb module for Duchenne muscular dystrophy

Lookup NU author(s): Dr Anna Mayhew, Meredith JamesORCiD, Professor Volker StraubORCiD



This is the authors' accepted manuscript of an article that has been published in its final definitive form by Blackwell Publishing Ltd, 2019.

For re-use rights please refer to the publisher's terms and conditions.


© 2019 Mac Keith PressAim: To report the differences between Performance of Upper Limb (PUL) versions 1.2 and 2.0, compare the measurement ability of the two versions, and compare their longitudinal performance in Duchenne muscular dystrophy. Method: Rasch analysis was performed on the dual data from three centres to confirm whether the two scales measure the same construct. Change scores in natural history for the different domains were compared for the two versions. Results: Rasch analysis demonstrated that both versions measure the same construct and that the PUL 2.0 was a better fit to the construct of motor performance and better able to detect change at 12 months in all levels of ability than the PUL 1.2. This was also true when change scores were reviewed over 2 years. Interpretation: Our results confirm that the PUL 1.2 and 2.0 versions detect change in all domains over 2 years. They also demonstrate that simplifying the original scoring of the PUL 1.2 for the revised PUL 2.0 maintains the validity of the construct and enhances the scale measurement qualities. What this paper adds: The original and revised Performance of Upper Limb (PUL) scales measure the same construct. Both scales detected change in all domains over 2 years. The PUL 2.0 enhances the measurement qualities of the scale.

Publication metadata

Author(s): Mayhew AG, Coratti G, Mazzone ES, Klingels K, James M, Pane M, Straub V, Goemans N, Mercuri E, Ricotti V, Muntoni F, Ridout D, Selby V

Publication type: Article

Publication status: Published

Journal: Developmental Medicine and Child Neurology

Year: 2019

Volume: 62

Issue: 5

Pages: 633-639

Print publication date: 01/05/2020

Online publication date: 19/09/2019

Acceptance date: 26/07/2019

Date deposited: 27/11/2019

ISSN (print): 0012-1622

ISSN (electronic): 1469-8749

Publisher: Blackwell Publishing Ltd


DOI: 10.1111/dmcn.14361

PubMed id: 31538331


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Funder referenceFunder name
SMA Trust and MDUK for the SMA REACH UK project