title: Symptom burden in persons with myotonic and facioscapulohumeral muscular dystrophy.
abstract: OBJECTIVE
  This study examines the prevalence of pain, fatigue, imbalance, memory impairment, and vision loss in persons with myotonic and facioscapulohumeral dystrophy and their association with functioning.
  
  
  METHODS
  A survey (N = 170) included measures of severity (0-10 scales) and course of these symptoms as well as measures of social integration, home competency, mental health, and productive activity. Descriptive and regression analyses examined the associations between symptoms and functioning.
  
  
  RESULTS
  Fatigue (91%), imbalance (82%), and pain (77%) were the most commonly reported. The most severe symptom was fatigue (mean ± SD severity, 5.14 ± 2.81), followed by imbalance (4.95 ± 3.25). Symptoms were most likely to stay the same or worsen since onset. Controlling for potential medical and demographic confounds, symptoms were associated with 17% of the mental health variance, 10% of home competency, 10% of social integration, 16% of productive activity for myotonic dystrophy type 1, and 12% of productive activity for facioscapulohumeral muscular dystrophy.
  
  
  CONCLUSIONS
  Pain, fatigue, and imbalance are common in persons with muscular dystrophy. Interventions may be useful to mitigate their impact on functioning. Further research should examine these relationships to guide clinical practices.
authors.affiliation: From the Department of Rehabilitation Medicine (AES, KM, MPJ, IRM) and MEDEX Division (GTC), University of Washington School of Medicine, Seattle; and St. Luke's Rehabilitation Institute, Spokane, Washington (GTC).
authors.forename: Amanda E
authors.initials: AE
authors.lastname: Smith
authors.forename: Kara
authors.initials: K
authors.lastname: McMullen
authors.forename: Mark P
authors.initials: MP
authors.lastname: Jensen
authors.forename: Gregory T
authors.initials: GT
authors.lastname: Carter
authors.forename: Ivan R
authors.initials: IR
authors.lastname: Molton
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D017677:Age Distribution; D000369:Aged, 80 and over; D003430:Cross-Sectional Studies; D005221:Fatigue / Q000453:epidemiology* / Q000209:etiology / Q000503:physiopathology; D005260:Female; D006801:Humans; D015994:Incidence; D008297:Male; D008569:Memory Disorders / Q000453:epidemiology* / Q000209:etiology / Q000503:physiopathology; D008875:Middle Aged; D020391:Muscular Dystrophy, Facioscapulohumeral / Q000150:complications* / Q000175:diagnosis / Q000534:rehabilitation; D009223:Myotonic Dystrophy / Q000150:complications* / Q000175:diagnosis / Q000534:rehabilitation; D010146:Pain / Q000453:epidemiology* / Q000209:etiology / Q000503:physiopathology; D011379:Prognosis; D012044:Regression Analysis; D018570:Risk Assessment; D012720:Severity of Illness Index; D017678:Sex Distribution; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D014786:Vision Disorders / Q000453:epidemiology / Q000209:etiology / Q000503:physiopathology; D055815:Young Adult