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.
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.
Authors: Fieke M Cox; Monique Reijnierse; Carla S P van Rijswijk; Axel R Wintzen; Jan J Verschuuren; Umesh A Badrising Journal: Rheumatology (Oxford) Date: 2011-02-02 Impact factor: 7.580
Authors: Umesh A Badrising; Marion L C Maat-Schieman; Johannes C van Houwelingen; Peter A van Doorn; Sjoerd G van Duinen; Baziel G M van Engelen; Carin G Faber; Jessica E Hoogendijk; Aeiko E de Jager; Peter J Koehler; Marianne de Visser; Jan J G M Verschuuren; Axel R Wintzen Journal: J Neurol Date: 2005-06-17 Impact factor: 4.849
Authors: Michal Feldon; Payam Noroozi Farhadi; Hermine I Brunner; Lukasz Itert; Bob Goldberg; Abdullah Faiq; Jesse Wilkerson; Kathryn M Rose; Lisa G Rider; Frederick W Miller; Edward H Giannini Journal: Arthritis Care Res (Hoboken) Date: 2017-09-21 Impact factor: 4.794