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Demographic and clinical features of inclusion body myositis in north America
Author(s) -
Paltiel A. David,
Ingvarsson Einar,
Lee Donald K. K.,
Leff Richard L.,
Nowak Richard J.,
Petschke Kurt D.,
RichardsShubik Seth,
Zhou Ange,
Shubik Martin,
O'Connor Kevin C.
Publication year - 2015
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.24562
Subject(s) - inclusion body myositis , medicine , demographics , natural history , natural history study , physical therapy , population , weakness , myositis , ibm , clinical trial , activities of daily living , muscle weakness , epidemiology , physical medicine and rehabilitation , pediatrics , gerontology , demography , surgery , materials science , environmental health , sociology , nanotechnology
: Few studies of the demographics, natural history, and clinical management of inclusion body myositis (IBM) have been performed in a large patient population. To more accurately define these characteristics, we developed and distributed a questionnaire to patients with IBM. Methods : A cross‐sectional, self‐reporting survey was conducted. Results : The mean age of the 916 participants was 70.4 years, the male‐to‐female ratio was 2:1, and the majority reported difficulty with ambulation and activities of daily living. The earliest symptoms included impaired use and weakness of arms and legs. The mean time from first symptoms to diagnosis was 4.7 years. Half reported that IBM was their initial diagnosis. A composite functional index negatively associated with age and disease duration, and positively associated with participation in exercise. Conclusions : These data are valuable for informing patients how IBM manifestations are expected to impair daily living and indicate that self‐reporting could be used to establish outcome measures in clinical trials. Muscle Nerve 52: 527–533, 2015