Symptom burden in persons with myotonic and facioscapulohumeral muscular dystrophy.

TitleSymptom burden in persons with myotonic and facioscapulohumeral muscular dystrophy.
Publication TypeJournal Article
AuthorsSmith AE, McMullen K, Jensen MP, Carter GT, Molton IR
JournalAm J Phys Med Rehabil
Date Published2014 May
Activities of Daily Living, Adult, Age Distribution, Aged, 80 and over, Cross-Sectional Studies, Fatigue, Female, Humans, Incidence, Male, Memory Disorders, Middle Aged, Muscular Dystrophy, Facioscapulohumeral, Myotonic Dystrophy, Pain, Prognosis, Questionnaires, Regression Analysis, Risk Assessment, Severity of Illness Index, Sex Distribution, Sickness Impact Profile, Vision Disorders, Young Adult

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. DESIGN: 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.

PubMed ID24247759