Myotonic dystrophy type 1: outcome

Written and reviewed by Dr Ibrahim Imam, Consultant Neurologist. Last reviewed .

Myotonic dystrophy type 1: outcome. Fitness, Personal care, Communication, Housing, Mobility, Wheelchair dependency. Fully referenced neurology checklist.

Lifestyle limitations

  • Fitness
  • Personal care
  • Communication
  • Housing
  • Mobility
  • Wheelchair dependency
  • Responsibility
  • Interpersonal relationships
  • Community life
  • Education
  • Employment
  • Recreation

Outcome predictors (The Myotonic Dystrophy Health Index)

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Mortality risk predictors (The DM1 Prognostic Score)

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Causes of death

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References

  1. Gagnon C, Noreau L, Moxley RT, et al. Towards an integrative approach to the management of myotonic dystrophy type 1. JNNP 2007; 78:800-806.
  2. Heatwole C, Bode R, Johnson N, et al. Myotonic Dystrophy Health Index: initial evaluation of a disease-specific outcome measure. Muscle Nerve 2014; 49:906-914. 
  3. Wahbi K, Porcher R, Laforêt P, et al. Development and validation of a new scoring system to predict survival in patients with myotonic dystrophy type 1. JAMA Neurol 2018; 75:573-581.
  4. de Die-Smulders CEM, Howeler CJ, Thijs C, et al. Age and causes of death in adult-onset myotonic dystrophy. Brain 1998; 121:1557-1563.

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