Abstract

There is little consensus about measurement of physical activity in adults with muscular dystrophy. This systematic review summarizes evidence for measurement properties of direct and indirect measures of physical activity in adults with muscular dystrophy. A two-phase search for peer-reviewed articles identified firstly, studies which measured physical activity in this population and secondly, studies reporting the measurement properties of activity measures. Methodological quality was assessed using COSMIN guidelines and a best evidence synthesis conducted. Phase 1 included 53 studies identifying 63 measures including accelerometers, direct observation, heartrate monitors, calorimetry, positional sensors, activity diaries, single scales and questionnaires. Phase 2 included 26 studies of measurement properties for 32 measures. Methodological quality of the included studies was low, only 2 were rated good. There was insufficient evidence to robustly recommend any physical activity measures and further research is required to validate measures of physical activity for adults with muscular dystrophy. Based on the findings of this review, measures with potential for further study have been highlighted.

Highlights

  • The aim of this review was to appraise measures of physical activity for the assessment of adults with muscular dystrophy

  • Activity measurement was generalizable across gender, mobility from independent walking to wheelchair use, age range from teenager to elderly and amongst different muscular dystrophy diagnoses

  • The triaxial GENEActiv has been validated over 6 minutes or less in adults with myotonic dystrophy [81] with construct validity supported incidentally in a high quality randomised controlled trials (RCTs) [82] and the biaxial StepWatch has been extensively validated in ambulant people with Multiple Sclerosis, Parkinson’s Disease and children with Duchenne’s Muscular Dystrophy [71,83,84,85]

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Summary

Introduction

The aim of this review was to appraise measures of physical activity for the assessment of adults with muscular dystrophy. Effective physical activity measurement is important to evaluate outcomes in randomised controlled trials (RCTs), to monitor disease progression and to make recommendations for optimising physical activity [1]. More research reporting quantified physical activity levels is required to determine optimal activity for adults with muscular dystrophy and to evaluate potential risks, such as exercise-induced damage to dystrophic muscle [4,5]. Physical activity is defined as behaviours involving bodily movements and energy expenditure [6,7]. Measurement of physical activity can be defined using a well-recognised conceptual framework [8,9] which considers Frequency, Intensity, Timing and Type (FITT) of activity or overall measurement encompassing these parameters (see Figure 1)

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