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. 2015 Oct;52(4):527-33.
doi: 10.1002/mus.24562. Epub 2015 Feb 17.

Demographic and clinical features of inclusion body myositis in North America

A David Paltiel  1   2 , Einar Ingvarsson  2 , Donald K K Lee  2 , Richard L Leff  3 , Richard J Nowak  4 , Kurt D Petschke  1 , Seth Richards-Shubik  5 , Ange Zhou  2 , Martin Shubik  2 , Kevin C O'Connor  4
Affiliations

Demographic and clinical features of inclusion body myositis in North America

A David Paltiel et al. Muscle Nerve. 2015 Oct.

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.

Keywords: demographics; inclusion body myositis; myopathy; natural history; survey.

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Figures

Figure 1
Figure 1
Age and disease duration associate with disability in patients with IBM. A functional index, calculated from 10 scores reporting ambulation and daily living activities, negatively associated with both the age of respondents and the number of years since diagnosis. The mean of the functional activity index was plotted against the age (years) of respondents (A) or disease duration (B) indicated by the number of years since the diagnosis of IBM. The size of the data points in each graph represents the relative number of respondents in each age group.
Figure 2
Figure 2
Participation in exercise associates with better function in patients with IBM. A functional index, calculated from scores reporting ambulation and daily living activities, was compared among survey respondents. Three fixed effects models were estimated that include age and gender, as well as indicators for either: any participation in exercise (A), or type of exercise (swimming, physical therapy, or other unspecified forms of exercise) (B), or hours of exercise per week (C). Using these indicators, comparisons were made relative to no exercise (A–C), and between types of exercise (B) or hours of exercise (C). Statistical differences are indicated when significant.
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