Journal of Physical Activity Research
ISSN (Print): 2576-1919 ISSN (Online): 2574-4437 Website: Editor-in-chief: Peter Hart
Open Access
Journal Browser
Journal of Physical Activity Research. 2019, 4(1), 1-25
DOI: 10.12691/jpar-4-1-1
Open AccessLiterature Review

Measurement of Physical Activity in Adults with Muscular Dystrophy: A Systematic Review

Sarah F. Roberts-Lewis1, , Michael R. Rose2, Claire M. White1 and Farah Seedat2

1School of Population Health and Environmental Sciences, King’s College London, SE1 1UL, United Kingdom

2Neurology Department, King’s College Hospital, London, SE5 9RS, United Kingdom

Pub. Date: December 18, 2018

Cite this paper:
Sarah F. Roberts-Lewis, Michael R. Rose, Claire M. White and Farah Seedat. Measurement of Physical Activity in Adults with Muscular Dystrophy: A Systematic Review. Journal of Physical Activity Research. 2019; 4(1):1-25. doi: 10.12691/jpar-4-1-1


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.

measure physical activity muscular dystrophy adult validity

Creative CommonsThis work is licensed under a Creative Commons Attribution 4.0 International License. To view a copy of this license, visit


[1]  Mercuri E, Mayhew A, Muntoni F, Messina S, Straub V, Van Ommen GJ, Voit T, Bertini E, Bushby K, Network T-NN. Towards harmonisation of outcome measures for DMD and SMA within TREAT-NMD; report of three expert workshops. Neuromuscul Disord 2008; 18(11): 894-903.
[2]  Reffin J, Dewar, L and the Adult Neuromuscular Physiotherapy Special Interest Group. Exercise advice for adults with muscle-wasting conditions. In: Campagn MD, editor. www.musculardystrophyukorg. London: Muscular Dystrophy UK; 2014.
[3]  Fowler WM, Jr. Role of physical activity and exercise training in neuromuscular diseases. Am J Phys Med Rehabil 2002; 81(11 Suppl): S187-195.
[4]  Siciliano G, Simoncini C, Giannotti S, Zampa V, Angelini C, Ricci G. Muscle exercise in limb girdle muscular dystrophies: pitfall and advantages. Acta Myol 2015; 34(1): 3-8.
[5]  Ansved T. Muscular dystrophies: influence of physical conditioning on the disease evolution. Current opinion in clinical nutrition and metabolic care 2003; 6(4): 435-439.
[6]  Thompson PD and the American Heart Association Council on Nutrition PA, Metabolism Subcommittee on Physical Activity. Exercise and physical activity in the prevention and treatment of atherosclerotic cardiovascular disease. Circulation 2003; 107(24): 3109-3116.
[7]  Gabriel KKP, Morrow JR, Woolsey ALT. Framework for Physical Activity as a Complex and Multidimensional Behavior. Journal of Physical Activity & Health 2012; 9: S11-S18.
[8]  Shephard RJ. Limits to the measurement of habitual physical activity by questionnaires. Br J Sports Med 2003; 37(3): 197-206; discussion 206.
[9]  Kowalski K, Rhodes R, Naylor PJ, Tuokko H, MacDonald S. Direct and indirect measurement of physical activity in older adults: a systematic review of the literature. Int J Behav Nutr Phys Act 2012; 9: 148.
[10]  Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, Bouter LM, de Vet HCW. COSMIN Checklist Manual. Netherlands: VU University Medical Center, Amsterdam and the Anna Foundation, Leiden; January 2012.
[11]  Dishman RK, Washburn RA, Schoeller DA. Measurement of physical activity. Quest 2001; 53(3): 295-309.
[12]  Prince SA, Adamo KB, Hamel ME, Hardt J, Connor Gorber S, Tremblay M. A comparison of direct versus self-report measures for assessing physical activity in adults: a systematic review. Int J Behav Nutr Phys Act 2008; 5: 56.
[13]  Silsbury Z, Goldsmith R, Rushton A. Systematic review of the measurement properties of self-report physical activity questionnaires in healthy adult populations. BMJ Open 2015; 5(9): e008430.
[14]  Hills AP, Mokhtar N, Byrne NM. Assessment of physical activity and energy expenditure: an overview of objective measures. Front Nutr 2014; 1: 5.
[15]  Schutz Y, Weinsier RL, Hunter GR. Assessment of free-living physical activity in humans: an overview of currently available and proposed new measures. Obes Res 2001; 9(6): 368-379.
[16]  Nightingale TE, Rouse PC, Thompson D, Bilzon JLJ. Measurement of Physical Activity and Energy Expenditure in Wheelchair Users: Methods, Considerations and Future Directions. Sports Med Open 2017; 3(1): 10.
[17]  Jimenez-Moreno AC, Newman J, Charman SJ, Catt M, Trenell MI, Gorman GS, Hogrel JY, Lochmuller H. Measuring Habitual Physical Activity in Neuromuscular Disorders: A Systematic Review. J Neuromuscul Dis 2017; 4(1): 25-52.
[18]  Brehm MA, Kempen JC, van der Kooi AJ, de Groot IJ, van den Bergen JC, Verschuuren JJ, Niks EH, Harlaar J. Age-related longitudinal changes in metabolic energy expenditure during walking in boys with Duchenne muscular dystrophy. PLoS One 2014; 9(12): e115200.
[19]  Cruz Guzman Odel R, Chavez Garcia AL, Rodriguez-Cruz M. Muscular dystrophies at different ages: metabolic and endocrine alterations. Int J Endocrinol 2012; 2012: 485376.
[20]  Yotsukura M, Fujii K, Katayama A, Tomono Y, Ando H, Sakata K, Ishihara T, Ishikawa K. Nine-year follow-up study of heart rate variability in patients with Duchenne-type progressive muscular dystrophy. Am Heart J 1998; 136(2): 289-296.
[21]  Della Marca G, Frusciante R, Scatena M, Dittoni S, Testani E, Vollono C, Losurdo A, Scarano E, Colicchio S, Farina B, Gnoni V, Mazza S, Tonali PA, Ricci E. Heart rate variability in facioscapulohumeral muscular dystrophy. Funct Neurol 2010; 25(4): 211-216.
[22]  Moher D, Liberati A, Tetzlaff J, Altman DG, Group P. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med 2009; 6(7): e1000097.
[23]  Craig CL, Marshall AL, Sjostrom M, Bauman AE, Booth ML, Ainsworth BE, Pratt M, Ekelund U, Yngve A, Sallis JF, Oja P. International physical activity questionnaire: 12-country reliability and validity. Med Sci Sports Exerc 2003; 35(8): 1381-1395.
[24]  Bull F. Physical Activity Guidelines in the UK: Review and Recommendations. In: Bull F, editor. Technical Report. Loughborough: Loughborough University; 2010.
[25]  Garber CE, Blissmer B, Deschenes MR, Franklin BA, Lamonte MJ, Lee IM, Nieman DC, Swain DP. American College of Sports Medicine position stand. Quantity and quality of exercise for developing and maintaining cardiorespiratory, musculoskeletal, and neuromotor fitness in apparently healthy adults: guidance for prescribing exercise. Med Sci Sports Exerc 2011; 43(7): 1334-1359.
[26]  Bryant M, Ashton L, Brown J, Jebb S, Wright J, Roberts K, Nixon J. Systematic review to identify and appraise outcome measures used to evaluate childhood obesity treatment interventions (CoOR): evidence of purpose, application, validity, reliability and sensitivity. Health Technol Assess 2014; 18(51): 1-380.
[27]  Terwee CB, Mokkink LB, Knol DL, Ostelo RW, Bouter LM, de Vet HC. Rating the methodological quality in systematic reviews of studies on measurement properties: a scoring system for the COSMIN checklist. Qual Life Res 2012; 21(4): 651-657.
[28]  Mokkink LB, Prinsen CAC, Bouter LM, de Vet HCW, Terwee CB. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) and how to select an outcome measurement instrument. Braz J Phys Ther 2016; 20(2): 105-113.
[29]  Andersen G, Heje K, Buch AE, Vissing J. High-intensity interval training in facioscapulohumeral muscular dystrophy type 1: a randomized clinical trial. J Neurol 2017; 264(6): 1099-1106.
[30]  Jacques MF, Orme P, Smith J, Morse CI. Resting Energy Expenditure in Adults with Becker's Muscular Dystrophy. PLoS One 2017; 12(1): e0169848.
[31]  Smith AE, Molton IR, Jensen MP. Self-reported incidence and age of onset of chronic comorbid medical conditions in adults aging with long-term physical disability. Disabil Health J 2016; 9(3): 533-538.
[32]  Morse CI, Smith J, Denny A, Tweedale J, Searle ND, Winwood K, Onambele-Pearson GL. Bone health measured using quantitative ultrasonography in adult males with muscular dystrophy. J Musculoskelet Neuronal Interact 2016; 16(4): 339-347.
[33]  Andersen G, Prahm KP, Dahlqvist JR, Citirak G, Vissing J. Aerobic training and postexercise protein in facioscapulohumeral muscular dystrophy: RCT study. Neurology 2015a; 85(5): 396-403.
[34]  Matsuda PN, Verrall AM, Finlayson ML, Moltan IR, Jensen MP. Falls Among Adults Aging With Disability. Arch Phys Med Rehab 2015; 96(3): 464-471.
[35]  Eichinger K, Dekdebrun J, Dilek N, Chen D, Pandya S. P.18.4 Physical activity profile and barriers to physical activity in individuals with myotonic dystrophy. Conference Publication Neuromuscular Disorders 2013. p 833.
[36]  Rosenberg DE, Bombardier CH, Artherholt S, Jensen MP, Motl RW. Self-reported depression and physical activity in adults with mobility impairments. Arch Phys Med Rehabil 2013; 94(4): 731-736.
[37]  Lassche S, Ottenheijm CA, Voermans NC, Westeneng HJ, Janssen BH, van der Maarel SM, Hopman MT, Padberg GW, Stienen GJ, van Engelen BG. Determining the role of sarcomeric proteins in facioscapulohumeral muscular dystrophy: a study protocol. BMC Neurol 2013; 13: 144.
[38]  Kierkegaard M, Harms-Ringdahl K, Holmqvist LW, Tollback A. Functioning and disability in adults with myotonic dystrophy type 1. Disabil Rehabil 2011a; 33(19-20): 1826-1836.
[39]  Phillips M, Marr L. Participation in physical activity by people with myotonic dystrophy. Germany. Conference Publication. 7th International Myotonic Dystrophy Consortium Meeting. 2009; p 440.
[40]  Phillips M, Flemming N, Tsintzas K. An exploratory study of physical activity and perceived barriers to exercise in ambulant people with neuromuscular disease compared with unaffected controls. Clinical Rehabilitation 2009; 23(8): 746-755.
[41]  Dawes H, Korpershoek N, Freebody J, Elsworth C, van Tintelen N, Wade DT, Izadi H, Jones DH. A pilot randomised controlled trial of a home-based exercise programme aimed at improving endurance and function in adults with neuromuscular disorders. J Neurol Neurosurg Psychiatry 2006; 77(8): 959-962.
[42]  Washburn RA, Zhu W, McAuley E, Frogley M, Figoni SF. The physical activity scale for individuals with physical disabilities: development and evaluation. Arch Phys Med Rehabil 2002; 83(2): 193-200.
[43]  Longmuir PEaB-O, O. Factors influencing the physical activity levels of youths with physical and sensory disabilities. Adapted Physical Activity Quarterly 2000; 17: 40-53.
[44]  Voet N, Bleijenberg G, Hendriks J, de Groot I, Padberg G, van Engelen B, Geurts A. Both aerobic exercise and cognitive-behavioral therapy reduce chronic fatigue in FSHD: an RCT. Neurology 2014; 83(21): 1914-1922.
[45]  Vissing CR, Preisler N, Husu E, Prahm KP, Vissing J. Aerobic training in patients with anoctamin 5 myopathy and hyperckemia. Muscle Nerve 2014; 50(1): 119-123.
[46]  Kimura S, Ozasa S, Nomura K, Yoshioka K, Endo F. Estimation of muscle strength from actigraph data in Duchenne muscular dystrophy. Pediatr Int 2014; 56(5): 748-752.
[47]  Chen KY, Harniss M, Patel S, Johnson K. Implementing technology-based embedded assessment in the home and community life of individuals aging with disabilities: a participatory research and development study. Disabil Rehabil Assist Technol 2014; 9(2): 112-120.
[48]  Kierkegaard M, Harms-Ringdahl K, Edstrom L, Widen Holmqvist L, Tollback A. Feasibility and effects of a physical exercise programme in adults with myotonic dystrophy type 1: a randomized controlled pilot study. J Rehabil Med 2011b; 43(8): 695-702.
[49]  Sveen ML, Jeppesen TD, Hauerslev S, Kober L, Krag TO, Vissing J. Endurance training improves fitness and strength in patients with Becker muscular dystrophy. Brain 2008; 131(Pt 11): 2824-2831.
[50]  Sveen ML, Jeppesen TD, Hauerslev S, Krag TO, Vissing J. Endurance training: an effective and safe treatment for patients with LGMD2I. Neurology 2007; 68(1): 59-61.
[51]  Olsen DB, Orngreen MC, Vissing J. Aerobic training improves exercise performance in facioscapulohumeral muscular dystrophy. Neurology 2005; 64(6): 1064-1066.
[52]  Orngreen MC, Olsen DB, Vissing J. Aerobic training in patients with myotonic dystrophy type 1. Ann Neurol 2005; 57(5): 754-757.
[53]  Kilmer DD, Wright NC, Aitkens S. Impact of a home-based activity and dietary intervention in people with slowly progressive neuromuscular diseases. Arch Phys Med Rehabil 2005; 86(11): 2150-2156.
[54]  Aitkens S, Kilmer DD, Wright NC, McCrory MA. Metabolic syndrome in neuromuscular disease. Arch Phys Med Rehabil 2005; 86(5): 1030-1036.
[55]  McCrory MA, Kim HR, Wright NC, Lovelady CA, Aitkens S, Kilmer DD. Energy expenditure, physical activity, and body composition of ambulatory adults with hereditary neuromuscular disease. Am J Clin Nutr 1998; 67(6): 1162-1169.
[56]  Wright NC, Kilmer DD, McCrory MA, Aitkens SG, Holcomb BJ, Bernauer EM. Aerobic walking in slowly progressive neuromuscular disease: effect of a 12-week program. Arch Phys Med Rehabil 1996; 77(1): 64-69.
[57]  Aitkens SG, McCrory MA, Kilmer DD, Bernauer EM. Moderate resistance exercise program: its effect in slowly progressive neuromuscular disease. Arch Phys Med Rehabil 1993; 74(7): 711-715.
[58]  Veenhuizen Y, Cup EH, Groothuis JT, Hendriks JC, Adang EM, van Engelen BG, Geurts AC. Effectiveness and cost-effectiveness of a self-management group program to improve social participation in patients with neuromuscular disease and chronic fatigue: protocol of the Energetic study. BMC Neurol 2015; 15: 58.
[59]  Pasotti S, Magnani B, Longa E, Giovanetti G, Rossi A, Berardinelli A, Tupler R, D'Antona G. An integrated approach in a case of facioscapulohumeral dystrophy. BMC Musculoskel Dis 2014; 15.
[60]  Barfield JP, Newsome L, Malone LA. Exercise Intensity During Power Wheelchair Soccer. Arch Phys Med Rehabil 2016; 97(11): 1938-1944.
[61]  Meilleur K, Elliott J, Linton M, Vuillerot C, Bendixen R, Arveson I, Tounkara E, Waite M, Nichols C, Yang K, Donkervoort S, Dastgir J, Leach M, Bonnemann C, Jain M. Validation of actiGraph GT3X accelerometers in collagen 6-related muscular dystrophy and LAMA2-related muscular dystrophy. Conferecne proceedings. Neuromuscular Disord 2015; 25: S265-S266.
[62]  Andersen G, Orngreen MC, Preisler N, Jeppesen TD, Krag TO, Hauerslev S, van Hall G, Vissing J. Protein-carbohydrate supplements improve muscle protein balance in muscular dystrophy patients after endurance exercise: a placebo-controlled crossover study. Am J Physiol Regul Integr Comp Physiol 2015; 308(2): R123-130.
[63]  Dahlqvist JR, Voss LG, Lauridsen T, Krag TO, Vissing J. A Pilot Study of Muscle Plasma Protein Changes after Exercise. Muscle Nerve 2014; 49(2): 261-266.
[64]  Andersen SP, Sveen ML, Hansen RS, Madsen KL, Hansen JB, Madsen M, Vissing J. Creatine kinase response to high-intensity aerobic exercise in adult-onset muscular dystrophy. Muscle Nerve 2013; 48(6): 897-901.
[65]  van der Kooi EL, Kalkman JS, Lindeman E, Hendriks JC, van Engelen BG, Bleijenberg G, Padberg GW. Effects of training and albuterol on pain and fatigue in facioscapulohumeral muscular dystrophy. J Neurol 2007; 254(7): 931-940.
[66]  Taivassalo T, De Stefano N, Chen J, Karpati G, Arnold DL, Argov Z. Short-term aerobic training response in chronic myopathies. Muscle Nerve 1999; 22(9): 1239-1243.
[67]  Janssen B, Voet N, Geurts A, van Engelen B, Heerschap A. Quantitative MRI reveals decelerated fatty infiltration in muscles of active FSHD patients. Neurology 2016; 86(18): 1700-1707.
[68]  van Engelen B, Consortium O. Cognitive behaviour therapy plus aerobic exercise training to increase activity in patients with myotonic dystrophy type 1 (DM1) compared to usual care (OPTIMISTIC): study protocol for randomised controlled trial. Trials 2015; 16: 224.
[69]  Kalkman JS, Schillings ML, Zwarts MJ, van Engelen BG, Bleijenberg G. The development of a model of fatigue in neuromuscular disorders: a longitudinal study. J Psychosom Res 2007; 62(5): 571-579.
[70]  Wiles CM, Busse ME, Sampson CM, Rogers MT, Fenton-May J, van Deursen R. Falls and stumbles in myotonic dystrophy. J Neurol Neurosurg Psychiatry 2006; 77(3): 393-396.
[71]  Busse ME, Pearson OR, Van Deursen R, Wiles CM. Quantified measurement of activity provides insight into motor function and recovery in neurological disease. J Neurol Neurosurg Psychiatry 2004; 75(6): 884-888.
[72]  Heutinck L, Kampen NV, Jansen M, Groot IJ. Physical Activity in Boys With Duchenne Muscular Dystrophy Is Lower and Less Demanding Compared to Healthy Boys. Journal of child neurology 2017; 32(5): 450-457.
[73]  Harris F, Sprigle S, Sonenblum SE, Maurer CL. The participation and activity measurement system: an example application among people who use wheeled mobility devices. Disabil Rehabil Assist Technol 2010; 5(1): 48-57.
[74]  Florence JM, Hagberg JM. Effect of training on the exercise responses of neuromuscular disease patients. Med Sci Sports Exerc 1984; 16(5): 460-465.
[75]  Martin JJ, Whalen L. Self-concept and physical activity in athletes with physical disabilities. Disabil Health J 2012; 5(3): 197-200.
[76]  McLean L, Longmuir PE. Development and pilot testing of a survey instrument to evaluate the current level of physical activity and knowledge of available sport opportunities among physically disabled children in Ontario. Canada: Ontario Ministry of Culture, Tourism and Recreation; 1990. Project Report 88-80-0030.
[77]  van Poppel MN, Chinapaw MJ, Mokkink LB, van Mechelen W, Terwee CB. Physical activity questionnaires for adults: a systematic review of measurement properties. Sports medicine 2010; 40(7): 565-600.
[78]  Kelly LA, McMillan DG, Anderson A, Fippinger M, Fillerup G, Rider J. Validity of actigraphs uniaxial and triaxial accelerometers for assessment of physical activity in adults in laboratory conditions. BMC Med Phys 2013; 13(1): 5.
[79]  Ganea R, Jeannet PY, Paraschiv-Ionescu A, Goemans NM, Piot C, Van den Hauwe M, Aminian K. Gait assessment in children with duchenne muscular dystrophy during long-distance walking. Journal of child neurology 2012; 27(1): 30-38.
[80]  Van Remoortel H, Giavedoni S, Raste Y, Burtin C, Louvaris Z, Gimeno-Santos E, Langer D, Glendenning A, Hopkinson NS, Vogiatzis I, Peterson BT, Wilson F, Mann B, Rabinovich R, Puhan MA, Troosters T, consortium PR. Validity of activity monitors in health and chronic disease: a systematic review. Int J Behav Nutr Phys Act 2012; 9: 84.
[81]  Jimenez-Moreno AC, Charman SJ, Nikolenko N, Larweh M, Turner C, Gorman G, Lochmuller H, Catt M. Analyzing walking speeds with ankle and wrist worn accelerometers in a cohort with myotonic dystrophy. Disabil Rehabil 2018: 1-7.
[82]  Okkersen K, Jimenez-Moreno C, Wenninger S, Daidj F, Glennon J, Cumming S, Littleford R, Monckton DG, Lochmuller H, Catt M, Faber CG, Hapca A, Donnan PT, Gorman G, Bassez G, Schoser B, Knoop H, Treweek S, van Engelen BGM, consortium O. Cognitive behavioural therapy with optional graded exercise therapy in patients with severe fatigue with myotonic dystrophy type 1: a multicentre, single-blind, randomised trial. Lancet Neurol 2018; 17(8): 671-680.
[83]  McDonald CM, Widman LM, Walsh DD, Walsh SA, Abresch RT. Use of step activity monitoring for continuous physical activity assessment in boys with Duchenne muscular dystrophy. Arch Phys Med Rehabil 2005; 86(4): 802-808.
[84]  Davidson ZE, Ryan MM, Kornberg AJ, Walker KZ, Truby H. Strong correlation between the 6-minute walk test and accelerometry functional outcomes in boys with Duchenne muscular dystrophy. Journal of child neurology 2015; 30(3): 357-363.
[85]  Fowler EG, Staudt LA, Heberer KR, Sienko SE, Buckon CE, Bagley AM, Sussman MD, McDonald CM. Longitudinal community walking activity in Duchenne muscular dystrophy. Muscle Nerve 2018; 57(3): 401-406.
[86]  Elsworth C, Dawes H, Winward C, Howells K, Collett J, Dennis A, Sackley C, Wade D. Pedometer step counts in individuals with neurological conditions. Clin Rehabil 2009; 23(2): 171-175.
[87]  Gorter JW, Noorduyn SG, Obeid J, Timmons BW. Accelerometry: a feasible method to quantify physical activity in ambulatory and nonambulatory adolescents with cerebral palsy. International journal of pediatrics; 2012: 329284.
[88]  Ehrler F, Weber C, Lovis C. Influence of Pedometer Position on Pedometer Accuracy at Various Walking Speeds: A Comparative Study. J Med Internet Res 2016; 18(10), e268.
[89]  Achten J, Jeukendrup AE. Heart rate monitoring: applications and limitations. Sports medicine 2003; 33(7): 517-538.
[90]  Srivastava NK, Yadav R, Mukherjee S, Sinha N. Perturbation of muscle metabolism in patients with muscular dystrophy in early or acute phase of disease: In vitro, high resolution NMR spectroscopy based analysis. Clin Chim Acta 2018; 478: 171-181.
[91]  Plasqui G, Joosen AM, Kester AD, Goris AH, Westerterp KR. Measuring free-living energy expenditure and physical activity with triaxial accelerometry. Obes Res 2005; 13(8): 1363-1369.
[92]  Hassett L, Moseley A, Harmer A, van der Ploeg HP. The reliability, validity, and feasibility of physical activity measurement in adults with traumatic brain injury: an observational study. J Head Trauma Rehabil 2015; 30(2), E55-61.
[93]  van der Ploeg HP, Streppel KR, van der Beek AJ, van der Woude LH, Vollenbroek-Hutten M, van Mechelen W. The Physical Activity Scale for Individuals with Physical Disabilities: test-retest reliability and comparison with an accelerometer. J Phys Act Health 2007; 4(1): 96-100.
[94]  de Groot S, van der Woude LH, Niezen A, Smit CA, Post MW. Evaluation of the physical activity scale for individuals with physical disabilities in people with spinal cord injury. Spinal Cord 2010; 48(7): 542-547.
[95]  van den Berg-Emons RJ, L'Ortye AA, Buffart LM, Nieuwenhuijsen C, Nooijen CF, Bergen MP, Stam HJ, Bussmann JB. Validation of the Physical Activity Scale for individuals with physical disabilities. Arch Phys Med Rehabil 2011; 92(6): 923-928.
[96]  Warms CA, Belza BL, Whitney JD. Correlates of physical activity in adults with mobility limitations. Family & community health 2007; 30(2 Suppl), S5-16.
[97]  Kim S, So WY, Kim J, Sung DJ. Relationship between Bone-Specific Physical Activity Scores and Measures for Body Composition and Bone Mineral Density in Healthy Young College Women. PLoS One 2016; 11(9), e0162127.
[98]  Marsh HW, Martin AJ, Jackson S. Introducing a short version of the physical self description questionnaire: new strategies, short-form evaluative criteria, and applications of factor analyses. J Sport Exerc Psychol 2010; 32(4): 438-482.
[99]  Rutkowska I. Mobility in the Project - “Adapted Physical Activity - Theory and Practice”. In: Josef Pilsudski University of Physical Education, Warsaw.2014
[100]  Hurtig-Wennlof A, Hagstromer M, Olsson LA. The International Physical Activity Questionnaire modified for the elderly: aspects of validity and feasibility. Public Health Nutr 2010; 13(11): 1847-1854.
[101]  Timperio A, Salmon J, Crawford D. Validity and reliability of a physical activity recall instrument among overweight and non-overweight men and women. J Sci Med Sport 2003; 6(4): 477-491.
[102]  Brown WJ, Trost SG, Bauman A, Mummery K, Owen N. Test-retest reliability of four physical activity measures used in population surveys. J Sci Med Sport 2004; 7(2): 205-215.
[103]  Ekelund U, Sepp H, Brage S, Becker W, Jakes R, Hennings M, Wareham NJ. Criterion-related validity of the last 7-day, short form of the International Physical Activity Questionnaire in Swedish adults. Public Health Nutr 2006; 9(2): 258-265.
[104]  Johnson-Kozlow M, Sallis JF, Gilpin EA, Rock CL, Pierce JP. omparative validation of the IPAQ and the 7-Day PAR among women diagnosed with breast cancer. Int J Behav Nutr Phys Act 2006; 3: 7.
[105]  Hagstromer M, Oja P, Sjostrom M. The International Physical Activity Questionnaire (IPAQ): a study of concurrent and construct validity. Public Health Nutr 2006; 9(6): 755-762.
[106]  Lee PH, Macfarlane DJ, Lam TH, Stewart SM. Validity of the International Physical Activity Questionnaire Short Form (IPAQ-SF): a systematic review. Int J Behav Nutr Phys Act 2011; 8: 115.
[107]  Timperio A, Salmon J, Rosenberg M, Bull FC. Do logbooks influence recall of physical activity in validation studies? Med Sci Sports Exerc 2004; 36(7): 1181-1186.
[108]  Sternfeld B, Goldman-Rosas L. A systematic approach to selecting an appropriate measure of self-reported physical activity or sedentary behavior. J Phys Act Health 2012; 9 Suppl 1: S19-28.
[109]  Chan D. So why ask me? Are self-report data really that bad? In: Lance CE, Vandenberg RJ, editors. Statistical and methodological myths and urban legends: Received doctrine, verity, and fable in the organizational and social sciences. New York: Routledge, Taylor & Francis Group; 2009. p 309-336.
[110]  Nightingale TE, Walhin, J P, Thompson, D and Bilzon J L J. Predicting physical activity energy expenditure in wheelchair users with a multisensor device. BMJ Open Sport Exerc Med 2015(e000008).
[111]  Prahm KP, Witting N, Vissing J. Decreased variability of the 6-minute walk test by heart rate correction in patients with neuromuscular disease. PLoS One 2014; 9(12): e114273.
[112]  Corder K, Brage S, Wareham NJ, Ekelund U. Comparison of PAEE from combined and separate heart rate and movement models in children. Med Sci Sports Exerc 2005; 37(10): 1761-1767.
[113]  Duncan JS, Badland HM, Schofield G. Combining GPS with heart rate monitoring to measure physical activity in children: A feasibility study. J Sci Med Sport 2009; 12(5): 583-585.
[114]  Lovering RM, Porter NC, Bloch RJ. The muscular dystrophies: from genes to therapies. Phys Ther 2005; 85(12): 1372-1388.
[115]  Emery AE. The muscular dystrophies. Lancet 2002; 359(9307): 687-695.
[116]  Cassell J, Cassell, R., Down, F., Fowler, S., Gage, P., Geall, R., Inman, L., Manning, S., Martin, P., McConnell, J., Morrow, M., Reed, C., Reeks, F., Robinson, T., Savage, S., Smith, P. & Watling, J. Wheelchair Provision for Children and Adults with Muscular Dystrophy and other Neuromuscular Conditions. Best Practice Guidelines, Muscular Dystrophy Campaign 2011; 5: 39-48.
[117]  Tawil R, Van Der Maarel SM. Facioscapulohumeral muscular dystrophy. Muscle Nerve 2006; 34(1): 1-15.
[118]  Romitti P, Puzhankara A, Mathews K, Zamba G, Cunniff C, Andrews J, Matthews D, James K, Miller L, Druschel C, Fox D, Pandya S, Ciafaloni E, Adams M, Mandel D, Street N, Ouyang L, Constantin C, Costa P. Prevalence of Duchenne/Becker Muscular Dystrophy Among Males Aged 5--24 Years. CDC: Morbidity and Mortality Weekly Report 2009; 58(40): 1121-1142.
[119]  Lyden K, Petruski N, Staudenmayer J, Freedson P. Direct observation is a valid criterion for estimating physical activity and sedentary behavior. J Phys Act Health 2014; 11(4): 860-863.
[120]  Sim J, Wright CC. The kappa statistic in reliability studies: use, interpretation, and sample size requirements. Phys Ther 2005; 85(3): 257-268.
[121]  Perenboom RJ, Chorus AM. Measuring participation according to the International Classification of Functioning, Disability and Health (ICF). Disabil Rehabil 2003; 25(11-12): 577-587.
[122]  Brun BN, Mockler SR, Laubscher KM, Stephan CM, Collison JA, Zimmerman MB, Mathews KD. Childhood Activity on Progression in Limb Girdle Muscular Dystrophy 2I. Journal of child neurology 2017; 32(2): 204-209.
[123]  Wintzen AR, Lammers GJ, van Dijk JG. Does modafinil enhance activity of patients with myotonic dystrophy? A double-blind placebo-controlled crossover study. J Neurol 2007; 254(1): 26-28.
[124]  Brady LI, MacNeil LG, Tarnopolsky MA. Impact of habitual exercise on the strength of individuals with myotonic dystrophy type 1. Am J Phys Med Rehabil 2014; 93(9): 739-746; 747-738.
[125]  Angelini C, Peterle E, Gaiani A, Bortolussi L, Borsato C. Dysferlinopathy course and sportive activity: clues for possible treatment. Acta Myol 2011; 30(2): 127-132.
[126]  Shimizu-Fujiwara M, Komaki H, Nakagawa E, Mori-Yoshimura M, Oya Y, Fujisaki T, Tokita Y, Kubota N, Shimazaki R, Sato K, Ishikawa T, Goto K, Mochizuki H, Takanoha S, Ogata K, Kawai M, Konagaya M, Miyazaki T, Tatara K, Sugai K, Sasaki M. Decreased resting energy expenditure in patients with Duchenne muscular dystrophy. Brain Dev 2012; 34(3): 206-212.
[127]  Komaki H, Takata KI, Takanoha S, Mizuno T, Matsumura T, Shinno S, Kuru S, Tatara K, Sasaki M, Tanaka S, Tabata I. Total energy expenditure (TEE) of patients with Duchenne muscular dystrophy. Neuromuscular Disord 2011; 21(9-10): 652-652.
[128]  CEBM. Centre for Evidence Based Medicine: Study Designs. University of Oxford; 2018.