![]() ![]() Thus, patients should be comprehensively managed to achieve better HRQoL. Constipation was associated only with PF.Ĭonclusion: HRQoL of patients with HAM was worse than that of the general population and was associated with all major symptoms. Urinary dysfunction was associated with worse PF, GH, VT, and MH. Meanwhile, sensory disturbance in the legs was associated with a decrease in scores in all subscales. Gait dysfunction was associated with lower scores in physical functioning (PF), limitations on role functioning because of physical health, bodily pain, general health perception (GH), vitality (VT), and social functioning however, no association was observed between gait dysfunction and limitations on role functioning because of emotional problems and MH. The SF-36 subscale scores were significantly lower than the national standard of 50 ( p ≤ 0.001), except for mental health (MH). All the major symptoms were significantly associated with a decrease in the SF-6D score. The mean SF-6D score was 0.565, which was significantly lower than the national average (0.674 in the 60–69 years age group p < 0.001), exceeding the minimal important difference (0.05–0.1). Of the patients, 73.2% needed walking aid 42.7 and 67.1% had leg pain and numbness, respectively 92.1% had urinary dysfunction and 77.9% had constipation. Results: The mean age and disease duration were 62.0 and 16.5 years, respectively. A general liner model was used to estimate the impact of major HAM-related symptoms, including gait dysfunction, sensory disturbance in the legs (pain and numbness), urinary dysfunction, and constipation, on the SF-6D and SF-36 subscale scores. HRQoL was evaluated using the SF-6D (a health state utility value calculated from the SF-36) and eight SF-36 subscales. Methods: We analyzed the Short Form-36 (SF-36) and clinical data of 538 patients with HAM registered in the HAM-net, a nationwide patient registry for HAM in Japan. This study was designed to reveal the impact of HAM and related symptoms on health-related quality of life (HRQoL). Marianna University School of Medicine, Kawasaki, Japanīackground: Human T-lymphotropic virus type 1 (HTLV-1)-associated myelopathy (HAM) is a neuroinflammatory disease, causing various neurological symptoms, including motor, sensory, and bladder and bowel dysfunctions. 9Department of Preventive Medicine, St.8Department of Neurology, Yaizu City Hospital, Yaizu, Japan.7Division of Hematology and Oncology, Department of Medicine, University of California, Irvine School of Medicine, Orange, CA, United States.Marianna University Graduate School of Medicine, Kawasaki, Japan 6Department of Practical Management of Medical Information, St.Marianna University School of Medicine, Kawasaki, Japan 5Department of Frontier Medicine, Institute of Medical Science, St.3Division of Neurology, Department of Internal Medicine, St.2Department of Rare Diseases Research, Institute of Medical Science, St.Miyuna Kimura 1,2 Junji Yamauchi 2,3 Tomoo Sato 2,3 Naoko Yagishita 2 Natsumi Araya 2 Satoko Aratani 2,4 Kenichiro Tanabe 5 Erika Horibe 6 Toshiki Watanabe 6 Ariella Coler-Reilly 2 Misako Nagasaka 2,7 Yukari Akasu 3 Kei Kaburagi 3 Takayuki Kikuchi 3 Soichiro Shibata 3 Hirofumi Matsumoto 3 Akihito Koseki 3,8 Soichiro Inoue 1 Ayako Takata 9 Yoshihisa Yamano 2,3* ![]()
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