Physical inactivity is associated with lifestyle diseases and exercise of moderate intensity seems beneficial in DM1, but knowledge about physical activity and predictors of physical activity in individuals with myotonic dystrophy type 1 (DM1) is limited. The objective of this study is to assess physical activity and predictors of physical activity in individuals with DM1.
Sixty-seven adults with DM1 and 39 healthy adults were recruited. Physical activity was monitored by accelerometry and assessed using the International Physical Activity Questionnaire. Age, marital status, education, apathy, cognition, fatigue, and muscle strength were assessed as predictors of physical activity in DM1.
The individuals with DM1 were on average − 187 min (p < 0.00001) objectively and − 48% (p = 0.001) subjectively less physically active per week compared to healthy controls. Education was the only predictor of physical activity in DM1 (p = 0.02).
Individuals with DM1 are less physically active compared to healthy controls and only half of the patients fulfilled minimum requirements for recommended physical activity. Education is the only predictor of physical activity in DM1. Thus, enhancement of physical activity in individuals with DM1 might be suggested, and especially in the less educated individuals, but RCT studies are needed to guide exact recommendations.
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Hammarén E, Kjellby-Wendt G, Kowalski J, Lindberg C (2014) Factors of importance for dynamic balance impairment and frequency of falls in individuals with myotonic dystrophy type 1 a cross-sectional study including reference values of Timed Up & Go, 10m walk and step test. Neuromuscul Disord 24(3):207–215
Turner C, Hilton-Jones D (2014) Myotonic dystrophy: diagnosis, management and new therapies. Curr Opin Neurol 27(5):599–606
Voet NB, van der Kooi EL, Riphagen LL, Lindeman E, van Engelen BG, Geurts AC (2013) Strength training and aerobic exercise training for muscle disease. The Cochrane Collaboration, editor. Cochrane Database of Systematic Reviews. John Wiley and Sons, Ltd., Chichester
World Health Organization. Physical Activity (2018). https://www.who.int/ncds/prevention/physical-activity/gappa Accessed 17 Sep 2018
Sundhedsstyrelsen. Anbefalinger om fysisk aktivitet (2017). https://www.sst.dk/da/sundhed-og-livsstil/fysisk-aktivitet/anbefalinger?sc_site=website Accessed 10 Jan 2017
Vignos P (1983) Physical models of rehabilitation in neuromuscular disease. Muscle Nerve 6:323–338
Gagnon C, Chouinard M-C, Laberge L et al (2013) Prevalence of lifestyle risk factors in myotonic dystrophy type 1. Can J Neurol Sci 40(01):42–47
Eichinger K, Dekdebrun J, Dilek N, Pandya S, Chen D (2014) Physical activity profile and barriers to physical activity in individuals with myotonic dystrophy. Neurology 82(10):84
Phillips M, Marr L (2009) P3-12 Participation in physical activity by people with myotonic dystrophy. Med Genet
Wiles CM (2005) Falls and stumbles in myotonic dystrophy. J Neurol Neurosurg Psychiatry 77(3):393–396
Ayvat F, Ayvat E, Kılınç OG, Kılınç M, Yıldırım SA, Tan E (2019) Objective and subjective assessment of physical activity in adults with muscle diseases. Turk J Neurol Turk Noroloji Derg 25(3):117–122
Marin R, Biedrzycki R, Firinciogullari S (1991) Reliability and validity of the apathy evaluation scale. Psychiatry Res 38:143–162
Van der Elst W, Van Boxtel M, Van Breukelen G, Jolles J (2006) The Stroop color-word test influence of age, sex, and education; and normative data for a large sample across the adult age range. Assessment 13(1):62–79
Lerdal A, Kottorp A, Gay C, Aouizerat B, Portillo C, Lee K (2011) A 7-item version of the fatigue severity scale has better psychometric properties among HIV-infected adults: an application of a Rasch model. Qual Life Res 20:1447–1456
Freedson PS, Melanson E, Sirard J (1998) Calibration of the computer science and applications, Inc accelerometer. Med Sci Sports Exerc 30(5):777–781
Troiano RP (2007) Large-scale applications of accelerometers: new frontiers and new questions. Med Sci Sports Exerc 39(9):1501
International Physical Activity Questionnaire. International Physical Activity Questionnaire. https://sites.google.com/site/theipaq/questionnaire_links. Accessed 14 Feb 2020
Werlauff U, Højberg A, Firla-Holme R, Steffensen BF, Vissing J (2014) Fatigue in patients with spinal muscular atrophy type II and congenital myopathies: evaluation of the fatigue severity scale. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 23(5):1479–1488
Ofori EK, Angmorterh SK (2019) Relationship between physical activity, body mass index (BMI) and lipid profile of students in Ghana. Pan Afr Med J 33:30
Ransdell LB, Wells CL (1998) Physical activity in urban white, African-American, and Mexican-American women. Med Sci Sports Exerc 30(11):1608–1615
Kaminsky P, Poussel M, Pruna L, Deibener J, Chenuel B, Brembilla-Perrot B (2011) Organ dysfunction and muscular disability in myotonic dystrophy type 1. Medicine (Baltimore) 90(4):262–268
Herazo-Beltrán Y, Pinillos Y, Vidarte J, Crissien E, Suarez D, García R (2017) Predictors of perceived barriers to physical activity in the general adult population: a cross-sectional study. Braz J Phys Ther 21(1):44–50
Tittlbach SA, Jekauc D, Schmidt SCE, Woll A, Bös K (2017) The relationship between physical activity, fitness, physical complaints and BMI in German adults results of a longitudinal study. Eur J Sport Sci 17(8):1090–1099
Shirley Ryan Abilitylab. Apathy Evaluation Scale (Self, Informant, and Clinician Versions). https://www.sralab.org/rehabilitation-measures/apathy-evaluation-scale-includes-three-forms-self-informant-and-clinician. Accessed 14 Feb 2020
Jimenez-Moreno A, Okkersen K, Maas D et al. (2017) Implementing a graded exercise therapy to severely fatigued DM1 Patients: experience from the OPTIMISTIC Study 2017; International Myotonic Dystrophy Consortium Meeting
Okkersen K, Jimenez-Moreno C, Wenninger S et al (2018) 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 17(8):671–680
Hammarén E, Kjellby-Wendt G, Lindberg C (2015) Muscle force, balance and falls in muscular impaired individuals with myotonic dystrophy type 1: A five-year prospective cohort study. Neuromuscul Disord 25(2):141–148
Orngreen MC, Olsen DB, Vissing J (2005) Aerobic training in patients with myotonic dystrophy type 1. Ann Neurol 57(5):754–757
Missaoui B, Rakotovao E, Bendaya S et al (2010) Posture and gait abilities in patients with myotonic dystrophy (Steinert disease) Evaluation on the short-term of a rehabilitation program. Ann Phys Rehabil Med 53:387–398
Aldehag A, Jonsson H, Lindblad J, Kottorp A, Ansved T, Kierkegaard M (2013) Effects of hand-training in persons with myotonic dystrophy type 1 a randomised controlled cross-over pilot study. Disabil Rehabil 35(21):1798–1807
Gianola S, Pecoraro V, Lambiase S, Gatti R, Banfi G, Moja L (2013) Efficacy of muscle exercise in patients with muscular dystrophy: a systematic review showing a missed opportunity to improve outcomes. PLoS ONE 8(6):e65414
Roussel M-P, Hébert LJ, Duchesne E (2019) Intra-rater reliability and concurrent validity of quantified muscle testing for maximal knee extensors strength in men with myotonic dystrophy type 1. J Neuromuscul Dis 6(2):233–240
We are grateful for the grants from Axel Muusfeldt’s Foundation, the Family Hede Nielsen’s foundation, and Rigshospitalet’s Research Foundation.
Conflicts of interest
K. Knak received grants from Axel Muusfeldt’s Foundation, Familien Hede Nielsen’s Foundation, and Rigshospitalet’s Research Foundation. J. Vissing, N. Witting, and A. Sheikh declare that they have no conflict of interest.
The study was approved by the Regional Committee on Health Research Ethics in Denmark (H-17017556) and written informed consent was obtained.
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Knak, K.L., Sheikh, A.M., Witting, N. et al. Physical activity in myotonic dystrophy type 1. J Neurol 267, 1679–1686 (2020). https://doi.org/10.1007/s00415-020-09758-8
- Myotonic dystrophy
- Physical activity