title: Measuring Habitual Physical Activity in Neuromuscular Disorders: A Systematic Review.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: John Walton Muscular Dystrophy Research Centre, MRC centre for Neuromuscular Disease, Institute of Genetic Medicine, Newcastle University, UK.
authors.forename: Aura Cecilia
authors.initials: AC
authors.lastname: Jimenez-Moreno
authors.affiliation: Movelab, Institute of Cellular Medicine, Newcastle University, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Newman
authors.affiliation: Movelab, Institute of Cellular Medicine, Newcastle University, UK.
authors.forename: Sarah J
authors.initials: SJ
authors.lastname: Charman
authors.affiliation: Institute of Neuroscience, Newcastle University, UK.
authors.forename: Michael
authors.initials: M
authors.lastname: Catt
authors.affiliation: Movelab, Institute of Cellular Medicine, Newcastle University, UK.
authors.forename: Michael I
authors.initials: MI
authors.lastname: Trenell
authors.affiliation: Institute for Ageing and Health, Newcastle University, UK.
authors.forename: Grainne S
authors.initials: GS
authors.lastname: Gorman
authors.affiliation: Neuromuscular Physiology and Evaluation Lab, Institute of Myology, Paris, France.
authors.forename: Jean-Yves
authors.initials: JY
authors.lastname: Hogrel
authors.affiliation: John Walton Muscular Dystrophy Research Centre, MRC centre for Neuromuscular Disease, Institute of Genetic Medicine, Newcastle University, UK.
authors.forename: Hanns
authors.initials: H
authors.lastname: Lochmüller
mesh_terms: D016022:Case-Control Studies; D015444:Exercise; D000072936:Fitness Trackers; D006184:Habits; D006801:Humans; D009468:Neuromuscular Diseases / Q000503:physiopathology*; D000071066:Patient Reported Outcome Measures; D011795:Surveys and Questionnaires
keywords: Physical activity; activity monitor; daily activity; exercise; muscular dystrophy; neuromuscular disorders