Activities of daily living in myotonic dystrophy type 1

Erik Landfeldt*, Nikoletta Nikolenko, Cecilia Jimenez-Moreno, Sarah Cumming, Darren G. Monckton, Catharina G. Faber, Ingemar S. J. Merkies, Grainne Gorman, Chris Turner, Hanns Lochmueller

*Corresponding author for this work

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Objectives The objective of this cross-sectional, observational study was to investigate performance of activities of daily living in patients with myotonic dystrophy type 1 (DM1). Materials and Methods Adults with genetically confirmed DM1 were recruited from Newcastle University (Newcastle upon Tyne, UK) and University College London Hospitals NHS Foundation Trust (London, UK). Data on activities of daily living were recorded through the DM1-Activ (c) (scale scores range between 0 and 100, where a higher/lower score indicates a higher/lower ability). Results Our sample comprised 192 patients with DM1 (mean age: 46 years; 51% female). Patients reported most difficulties with running, carrying and putting down heavy objects, and standing on one leg, and least difficulties with eating soup, washing upper body, and taking a shower. Irrespective of the disease duration (mean: 20 years), most patients were able to perform basic and instrumental activities of daily living (eg personal hygiene and grooming, showering, eating, cleaning and shopping), with the exception of functional mobility/transfer tasks (eg walking uphill and running). The mean DM1-Activ (c) total score was estimated at 71 (95% CI: 68-74). Estimated progenitor cytosine-thymine-guanine repeat length and age explained 27% of the variance in DM1-Activ (c) total scores (P <.001). Conclusions We show that DM1 impairs performance of activities of daily living, in particular those requiring a high degree of muscle strength, stability and coordination. Yet, across the evolution of the disease, the majority of patients will still be able to independently perform most basic and instrumental activities of daily living.

Original languageEnglish
Pages (from-to)380-387
Number of pages8
JournalActa Neurologica Scandinavica
Issue number5
Publication statusPublished - May 2020


  • activities of daily living
  • quality of life
  • social participation


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