title: How robust is ACTIVLIM for the follow-up of activity limitations in patients with neuromuscular diseases?
abstract: This study aims to investigate the clinimetric properties of ACTIVLIM, a measure of activity limitations, when it is used in daily practice in a large nationwide representative cohort of patients with neuromuscular diseases. A cohort of 2986 patients was assessed at least once over 2 years in 6 national neuromuscular diseases reference centers. Successive Rasch analyses were conducted in order to investigate the scale validity, reliability, consistency across demographic and clinical sub-groups and its sensitivity to change. ACTIVLIM confirmed excellent fit to a unidimensional scale, with stable but 3-times more accurate item calibrations compared to the original publication. It showed a good reliability (R = 0.95), an appropriate targeting for 87% of the sample and an excellent invariance across age, gender, language and time. Despite some variations in the item difficulty hierarchy across diagnoses, ACTIVLIM exhibited a good capability to quantify small but significant changes in activity for various diagnostic groups. Overall, ACTIVLIM demonstrated very good clinimetric properties, allowing accurate quantitative measurement of activity limitations in both children and adults with a variety of neuromuscular diseases.
authors.affiliation: Institute of Neuroscience, Université Catholique de Louvain, Brussels, Belgium; Arsalis SPRL, Glabais, Belgium; Centre Interdisciplinaire de Recherche en Réadaptation et Intégration Sociale (CIRRIS), Université Laval, Quebec, Canada.
authors.forename: Charles Sèbiyo
authors.initials: CS
authors.lastname: Batcho
authors.affiliation: Institute of Neuroscience, Université Catholique de Louvain, Brussels, Belgium; Neuromuscular Reference Centre, Cliniques Universitaires St-Luc, Université Catholique de Louvain, Brussels, Belgium; Scientific Committee of the Belgian Neuromuscular Disease Registry, Belgium.
authors.forename: Peter Y K
authors.initials: PY
authors.lastname: Van den Bergh
authors.affiliation: Scientific Committee of the Belgian Neuromuscular Disease Registry, Belgium; KU Leuven - University of Leuven, Department of Neurosciences, VIB - Vesalius Research Center, Experimental Neurology - Laboratory of Neurobiology, Leuven, Belgium; University Hospitals Leuven, Department of Neurology, Leuven, Belgium.
authors.forename: Philip
authors.initials: P
authors.lastname: Van Damme
authors.affiliation: Scientific Institute of Public Health, Brussels, Belgium.
authors.forename: Anna J
authors.initials: AJ
authors.lastname: Roy
authors.affiliation: Institute of Neuroscience, Université Catholique de Louvain, Brussels, Belgium; Cliniques Universitaires Saint-Luc, Physical Medicine and Rehabilitation Department, Université Catholique de Louvain, Brussels, Belgium.
authors.forename: Jean-Louis
authors.initials: JL
authors.lastname: Thonnard
authors.affiliation: Institute of Neuroscience, Université Catholique de Louvain, Brussels, Belgium; Arsalis SPRL, Glabais, Belgium. Electronic address: Massimo.Penta@uclouvain.be.
authors.forename: Massimo
authors.initials: M
authors.lastname: Penta
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D004185:Disability Evaluation; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D009468:Neuromuscular Diseases / Q000175:diagnosis*; D011594:Psychometrics; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D055815:Young Adult
keywords: Activity limitations; Neuromuscular diseases; Patient-reported outcome measure; Rasch analysis