Background Neuromuscular disorders (NMDs) can lead to specific manual disabilities due to hand muscle weakness and atrophy, myotonia or loss of sensory function. The aim of this study was to adapt and validate the ABILHAND questionnaire in children and adults with NMDs using the Rasch model.
Methods This questionnaire contained specific manual activities for children and for adults, as well as common manual activities. 124 adult patients and the parents of 124 paediatric patients were asked to provide their perceived difficulty in performing each manual activity on a three level scale: impossible (0), difficult (1) or easy (2). Items were selected from well established psychometric criteria (ordered categories, equal item discrimination, adequate fit to the Rasch model, lack of redundancy) using the Rasch Unidimensional Measurement Models (RUMM2020) computer programme.
Results The 22 selected items contain four children specific items, four adult specific items and 14 items commonly applicable to both children and adults. They define a unidimensional and linear measure of manual ability and demonstrate continuous progression in their difficulty. The item hierarchy of difficulty was invariant across six patient related factors. The scale exhibited good precision (r=0.95) and the 22 items were well targeted to the patients' locations. The ABILHAND measures were strongly related to the ACTIVLIM measures (r=0.76) and poorly related to grip strength (r=0.36 for the right hand and r=0.40 for the left hand).
Conclusion This scale can be used for adults and children, allowing manual ability to be assessed from childhood to adulthood.
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The ABILHAND questionnaire and its administration instructions can be downloaded from www.rehab-scales.org in English, French and Dutch. The website also allows total raw scores for the ABILHAND questionnaire to be converted into a linear measure of activity limitations, according to the Rasch model.
Funding The study was supported by a grant from the ‘Association Belge contre les Maladies neuroMusculaires’, the Fonds Spéciaux de Recherche of the Université catholique de Louvain, the ‘Association Nationale d'Aide aux Handicapés’ and the ‘Fondation Saint-Luc’.
Competing interests None.
Ethics approval This study was conducted with the approval of the medical ethics committees of the Université catholique de Louvain and the Katholieke Universiteit Leuven.
Provenance and peer review Not commissioned; externally peer reviewed.