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Lookup NU author(s): Dr Cecilia Jimenez MorenoORCiD, Jane Newman, Dr Sarah Charman, Professor Mike Catt, Professor Mike TrenellORCiD, Professor Grainne Gorman, Professor Hanns Lochmuller
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).
© 2017 - IOS Press and the authors. All rights reserved. Free-living or habitual physical activity (HPA) refers to someone's performance in his or her free-living environment. Neuromuscular disorders (NMD) manifest through HPA, and the observation of HPA can be used to identify clinical risks and to quantify outcomes in research. This review summarizes and analyses previous studies reporting the assessment of HPA in NMD, and may serve as the basis for evidence-based decision-making when considering assessing HPA in this population. Methods: A systematic review was performed to identify all studies related to HPA in NMD, followed by a critical appraisal of the assessment methodology and a final review of the identified HPA tools. Results: A total of 22 studies were selected, reporting on eight different direct tools (or activity monitors) and ten structured patient-reported outcomes. Overall, HPA patterns in NMD differ from healthy control populations. There was a noticeable lack of validation studies for these tools and outcome measures in NMD. Very little information regarding feasibility and barriers for the application of these tools in this population have been published. Conclusions: The variety and heterogeneity of tools and methods in the published literature makes the comparison across different studies difficult, and methodological guidelines are warranted. We propose a checklist of considerations for the assessment and reporting of HPA in NMD.
Author(s): Jimenez-Moreno AC, Newman J, Charman SJ, Catt M, Trenell MI, Gorman GS, Hogrel J-Y, Lochmuller H
Publication type: Review
Publication status: Published
Journal: Journal of Neuromuscular Diseases
Year: 2017
Volume: 4
Issue: 1
Pages: 25-52
Online publication date: 28/02/2017
Acceptance date: 02/04/2016
ISSN (print): 2214-3599
ISSN (electronic): 2214-3602
Publisher: IOS Press
URL: https://doi.org/10.3233/JND-160195
DOI: 10.3233/JND-160195
