Translation, reliability, and validity of the Norwegian version of the ABILHAND-NMD and the ACTIVLIM for Myotonic Dystrophy type 1

Myotonic Dystrophy type 1 cause myopathy and altered muscle function. Impaired arm- and hand function increases patients' need for assistance and reduces independence. The use of patient reported outcome measures (PROMs) to uncover impairments and activity limitations is important in clinical p...

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Bibliographic Details
Published in:Disability and rehabilitation 2024-06, Vol.ahead-of-print (ahead-of-print), p.1-9
Main Authors: Fossmo, Hanne Ludt, Ørstavik, Kristin, Frich, Jan C., Robinson, Hilde Stendal
Format: Article
Language:English
Subjects:
Adult
Aged
Disability Evaluation
Female
Humans
Male
Middle Aged
Muscle disease
Myotonic Dystrophy
neuromuscular disorder
Norway
patient reported outcome measures
PROM
psychometric properties
Psychometrics
Quality of Life
Reproducibility of Results
Surveys and Questionnaires - standards
Translating
Translations
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Summary:Myotonic Dystrophy type 1 cause myopathy and altered muscle function. Impaired arm- and hand function increases patients' need for assistance and reduces independence. The use of patient reported outcome measures (PROMs) to uncover impairments and activity limitations is important in clinical practice and research. The Norwegian versions of ABILHAND-NMD and ACTIVLIM are reliable and valid measures of manual ability and activity limitations for adults with Myotonic Dystrophy type 1. To translate ABILHAND-NMD and ACTIVLIM into Norwegian and assess their psychometric properties in adults with Myotonic Dystrophy type 1(DM1). ABILHAND-NMD and ACTIVLIM were translated into Norwegian through a standardized translation process. Psychometric properties of the translated questionnaires were tested. Intraclass correlation coefficient (ICC 3.1 ) was used to assess test-retest reliability and Cronbach's α for internal consistency. The validity of the questionnaires was also assessed. A total of 39 adults with DM1 were included. We found excellent test-retest reliability on ABILHAND-NMD (ICC 0.91) and ACTIVLIM (ICC 0.93). We found a good internal consistency of ABILHAND-NMD with Cronbach's α (95%CI) of 0.80 (0.69-0.88) and ACTIVLIM with Cronbach's α (95%CI) of 0.88 (0.82-0.93) An expert group of healthcare professionals and a pilot group reported good face and content validity. We found a high correlation between ABILHAND-NMD and ACTIVLIM (r = 0.75), p 
ISSN:0963-8288
1464-5165
DOI:10.1080/09638288.2023.2231848