The updated retrospective questionnaire study of sporadic inclusion body myositis in Japan
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(2019) 14:155
RESEARCH
Open Access
The updated retrospective questionnaire study of sporadic inclusion body myositis in Japan Naoki Suzuki1 , Madoka Mori-Yoshimura2, Satoshi Yamashita3, Satoshi Nakano4, Ken-ya Murata5, Megumi Mori5, Yukie Inamori6, Naoko Matsui7, En Kimura3, Hirofumi Kusaka8, Tomoyoshi Kondo5, Hidefumi Ito5, Itsuro Higuchi6, Akihiro Hashiguchi6, Hiroyuki Nodera7, Ryuji Kaji7, Maki Tateyama1,9, Rumiko Izumi1, Hiroya Ono1,9, Masaaki Kato1,10, Hitoshi Warita1, Toshiaki Takahashi11, Ichizo Nishino12 and Masashi Aoki1*
Abstract Background: Sporadic inclusion body myositis (sIBM) is the most prevalent muscle disease in elderly people, affecting the daily activities. sIBM is progressive with unknown cause and without effective treatment. In 2015, sIBM was classified as an intractable disease by the Japanese government, and the treatment cost was partly covered by the government. This study aimed to examine the changes in the number of patients with sIBM over the last 10 years and to elucidate the cross-sectional profile of Japanese patients with sIBM. Methods: The number of sIBM patients was estimated through a reply-paid postcard questionnaire for attending physicians. Only patients diagnosed as “definite” or “probable” sIBM by clinical and biopsy sIBM criteria were included in this study (Lancet Neurol 6:620-631, 2007, Neuromuscul Disord 23:1044-1055, 2013). Additionally, a registered selfadministered questionnaire was also sent to 106 patients who agreed to reply via their attending physician, between November 2016 and March 2017. Results: The number of patients diagnosed with sIBM for each 5-year period was 286 and 384 in 2011 and 2016, respectively. Inability to stand-up, cane-dependent gait, inability to open a plastic bottle, choking on food ingestion, and being wheelchair-bound should be included as sIBM milestones. Eight patients were positive for anti-hepatitis C virus antibody; three of them were administered interferon before sIBM onset. Steroids were administered to 33 patients (31.1%) and intravenous immunoglobulin to 46 patients (43.4%). From 2016 to 2017, total of 70 patients applied for the designated incurable disease medical expenses subsidy program. Although the treatment cost was partly covered by the government, many patients expressed psychological/mental and financial anxieties. Conclusions: We determined the cross-sectional profile of Japanese patients with sIBM. Continuous support and prospective surveys are warranted. Keywords: Sporadic inclusion body myositis, Multicenter survey, Questionnaire, Aging, Muscle diseasef
* Correspondence: [email protected] 1 Department of Neurology, Tohoku University Graduate School of Medicine, 1-1 Seiryo-machi, Aoba-ku, Sendai 980-8574, Japan Full list of author information is available at the end of the article © The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribut
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