Multicenter questionnaire survey for sporadic inclusion body myositis in Japan.
Sporadic inclusion body myositis (sIBM) is the most prevalent acquired muscle disease in the elderly. sIBM is an intractable and progressive disease of unknown cause and without effective treatment. The etiology of sIBM is still unknown; however, genetic factors, aging, lifestyles, and environmental factors may be involved. The purpose of this study is to elucidate the cross-sectional profile of patients affected by sIBM in Japan.



We surveyed patient data for 146 cases diagnosed at a number of centers across Japan. We also issued a questionnaire for 67 patients and direct caregivers to further elucidate the natural history of the disease.



The mean age at the onset was 63.4 ± 9.2 years. The mean length of time from the onset to diagnosis was 55.52 ± 49.72 months, suggesting that there is a difficulty in diagnosing this disease with long-term consequences because of late treatment. 73 % described the psychological/mental aspect of the disease. The most popular primary caregiver was the patient's spouse and 57 % patients mentioned that they were having problems managing the finances.



Through these surveys, we described the cross-sectional profiles of sIBM in Japan. Many patients described psychological/mental and financial anxiety because of the aged profile of sIBM patients. The profiles of sIBM patients are similar to those in Western countries.
Department of Neurology, Tohoku University Graduate School of Medicine, 1-1 Seiryo-machi, Aoba-ku, Sendai, 980-8574, Japan.
Naoki
N
Suzuki
Department of Neurology, National Center Hospital, National Center of Neurology and Psychiatry (NCNP), Tokyo, Japan.
Madoka
M
Mori-Yoshimura
Department of Neurology, Graduate School of Medical Sciences, Kumamoto University, 1-1-1 Honjo, Chuo-ku, Kumamoto, Japan.
Satoshi
S
Yamashita
Department of Neurology, Osaka City General Hospital, 2-13-22 Miyakojima hondoori, Miyakojima-ku, Osaka, Japan.
Satoshi
S
Nakano
Department of Neurology, Wakayama Medical University, Wakayama, Japan.
Ken-Ya
KY
Murata
Department of Neurology and Geriatrics, Kagoshima University Graduate School of Medical and Dental Sciences, Kagoshima, Japan.
Yukie
Y
Inamori
Department of Clinical Neuroscience, Institute of Biomedical Sciences, Tokushima University Graduate School, Tokushima, Japan.
Naoko
N
Matsui
Department of Neurology, Graduate School of Medical Sciences, Kumamoto University, 1-1-1 Honjo, Chuo-ku, Kumamoto, Japan.
En
E
Kimura
Department of Neurology, Kansai Medical University, 2-5-1, Shin-machi, Hirakata, Osaka, Japan.
Hirofumi
H
Kusaka
Department of Neurology, Wakayama Medical University, Wakayama, Japan.
Tomoyoshi
T
Kondo
Department of Neurology and Geriatrics, Kagoshima University Graduate School of Medical and Dental Sciences, Kagoshima, Japan.
Itsuro
I
Higuchi
Department of Clinical Neuroscience, Institute of Biomedical Sciences, Tokushima University Graduate School, Tokushima, Japan.
Ryuji
R
Kaji
Department of Neurology, Tohoku University Graduate School of Medicine, 1-1 Seiryo-machi, Aoba-ku, Sendai, 980-8574, Japan.
Maki
M
Tateyama
Department of Neurology, Tohoku University Graduate School of Medicine, 1-1 Seiryo-machi, Aoba-ku, Sendai, 980-8574, Japan.
Rumiko
R
Izumi
Department of Neurology, Tohoku University Graduate School of Medicine, 1-1 Seiryo-machi, Aoba-ku, Sendai, 980-8574, Japan.
Hiroya
H
Ono
Department of Neurology, Tohoku University Graduate School of Medicine, 1-1 Seiryo-machi, Aoba-ku, Sendai, 980-8574, Japan.
Masaaki
M
Kato
Department of Neurology, Tohoku University Graduate School of Medicine, 1-1 Seiryo-machi, Aoba-ku, Sendai, 980-8574, Japan.
Hitoshi
H
Warita
Department of Neurology, National Hospital Organization Sendai-Nishitaga National Hospital, Sendai, Japan.
Toshiaki
T
Takahashi
Department of Neuromuscular Research, National Institute of Neuroscience, Tokyo, Japan.|Department of Genome Medicine Development, Medical Genome Center, National Center of Neurology and Psychiatry (NCNP), Tokyo, Japan.
Ichizo
I
Nishino
Department of Neurology, Tohoku University Graduate School of Medicine, 1-1 Seiryo-machi, Aoba-ku, Sendai, 980-8574, Japan. aokim@med.tohoku.ac.jp.
Masashi
M
Aoki
D000368:Aged; D005260:Female; D006801:Humans; D007564:Japan / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D018979:Myositis, Inclusion Body / Q000453:epidemiology*; D011795:Surveys and Questionnaires
Aging; Multicenter survey; Muscle disease; Questionnaire; Sporadic inclusion body myositis