Demographic and clinical features of inclusion body myositis in north America |
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| Authors: | A. David Paltiel PhD Einar Ingvarsson MBA Donald K. K. Lee PhD Richard L. Leff MD Richard J. Nowak MD Kurt D. Petschke BS Seth Richards‐Shubik PhD Ange Zhou PhD Martin Shubik PhD Kevin C. O'Connor PhD |
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| Affiliation: | 1. Yale School of Public Health, New Haven, Connecticut, USA;2. Yale School of Management, New Haven, Connecticut, USA;3. Richard L. Leff, MD, LLC, Chadds Ford, Pennsylvania, USA;4. Department of Neurology, Yale School of Medicine, New Haven, Connecticut, USA;5. H. John Heinz III College, Carnegie Mellon University, Pittsburgh, Pennsylvania, USA |
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| Abstract: | Introduction: 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 |
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| Keywords: | demographics inclusion body myositis myopathy natural history survey |
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