Health-Related Quality of Life Evaluation Using the Short Form-36 in Patients With Human T-Lymphotropic Virus Type 1-Associated Myelopathy

Frontiers in Medicine

article

Miyuna Kimura¹  Junji Yamauchi²  Tomoo Sato²  Naoko Yagishita²  Natsumi Araya²  Satoko Aratani²  Kenichiro Tanabe⁵  Erika Horibe⁶  Toshiki Watanabe⁶  Ariella Coler-Reilly²  Misako Nagasaka²  Yukari Akasu³  Kei Kaburagi³  Takayuki Kikuchi³  Soichiro Shibata³  Hirofumi Matsumoto³  Akihito Koseki³  Soichiro Inoue¹  Ayako Takata⁹  Yoshihisa Yamano² 

[1] Department of Anesthesiology, St. Marianna University School of Medicine;Department of Rare Diseases Research, Institute of Medical Science, St. Marianna University School of Medicine;Division of Neurology, Department of Internal Medicine, St. Marianna University School of Medicine;LSI Medience Co.;Department of Frontier Medicine, Institute of Medical Science, St. Marianna University School of Medicine;Department of Practical Management of Medical Information, St. Marianna University Graduate School of Medicine;Division of Hematology and Oncology, Department of Medicine, University of California, Irvine School of Medicine;Department of Neurology, Yaizu City Hospital;Department of Preventive Medicine, St. Marianna University School of Medicine

关键词: HTLV-1;    SF-36;    SF-6D;    quality of life;    HTLV-1-associated myelopathy;   

DOI  :  10.3389/fmed.2022.879379

学科分类：社会科学、人文和艺术（综合）

来源: Frontiers

【 摘 要 】

Background 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. This study was designed to reveal the impact of HAM and related symptoms on health-related quality of life (HRQoL). 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. HRQoL was evaluated using the SF-6D (a health state utility value calculated from the SF-36) and eight SF-36 subscales. 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. Results The mean age and disease duration were 62.0 and 16.5 years, respectively. 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. 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). All the major symptoms were significantly associated with a decrease in the SF-6D score. The SF-36 subscale scores were significantly lower than the national standard of 50 ( p ≤ 0.001), except for mental health (MH). 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. Meanwhile, sensory disturbance in the legs was associated with a decrease in scores in all subscales. Urinary dysfunction was associated with worse PF, GH, VT, and MH. Constipation was associated only with PF. Conclusion HRQoL of patients with HAM was worse than that of the general population and was associated with all major symptoms. Thus, patients should be comprehensively managed to achieve better HRQoL.

【 授权许可】

CC BY