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CREATION AND VALIDATION OF A BLADDER DYSFUNCTION SYMPTOM SCORE FOR HTLV-1-ASSOCIATED MYELOPATHY/TROPICAL SPASTIC PARAPARESIS
Yamakawa, Natsuko et al. | Date Issued: 2020
Author
Yamakawa, Natsuko
Yagishita, Naoko
Matsuo, Tomohiro
Yamauchi, Junji
Ueno, Takahiko
Inoue, Eisuke
Takata, Ayako
Nagasaka, Misako
Araya, Natsumi
Hasegawa, Daisuke
Coler-Reilly, Ariella
Tsutsumi, Shuntaro
Sato, Tomoo
Araujo, Abelardo
Casseb, Jorge
Gotuzzo, Eduardo
Jacobson, Steven
Martin, Fabiola
Puccioni-Sohler, Marzia
Taylor, Graham P.
Yamano, Yoshihisa
Affilliation
St. Marianna University School of Medicine. Institute of Medical Science. Department of Rare Diseases Research. Kawasaki, Japan / Tokai Central Hospital. Department of Neurology. Kakamigahara, Japan.
St. Marianna University School of Medicine. Institute of Medical Science. Department of Rare Diseases Research. Kawasaki, Japan.
Nagasaki University Graduate School of Biochemical Sciences. Department of Urology. Nagasaki, Japan.
St. Marianna University School of Medicine. Institute of Medical Science. Department of Rare Diseases Research. Kawasaki, Japan.
St. Marianna University School of Medicine. Department of Medical Informatics. Kawasaki, Japan.
St. Marianna University School of Medicine. Department of Medical Informatics. Kawasaki, Japan.
St. Marianna University School of Medicine. Department of Preventive Medicine. Kawasaki, Japan.
Karmanos Cancer Institute/Wayne State University. Department of Oncology. Detroit, MI, USA / St. Marianna University School of Medicine. Department of Advanced Medical Innovation. Kawasaki, Japan.
St. Marianna University School of Medicine. Institute of Medical Science. Department of Rare Diseases Research. Kawasaki, Japan.
St. Marianna University School of Medicine. Institute of Medical Science. Department of Rare Diseases Research. Kawasaki, Japan.
St. Marianna University School of Medicine. Institute of Medical Science. Department of Rare Diseases Research. Kawasaki, Japan.
St. Marianna University School of Medicine. Department of Advanced Medical Innovation. Kawasaki, Japan.
St. Marianna University School of Medicine. Institute of Medical Science. Department of Rare Diseases Research. Kawasaki, Japan.
Fundação Oswaldo Cruz. Instituto Nacional de Infectologia Evandro Chagas. Laboratório de Pesquisa Clínica em Neuroinfecção. Rio de Janeiro, RJ, Brasil.
Institute of Tropical Medicine of São Paulo. Sao Paulo, SP, Brazil.
Universidad Peruana Cayetano Heredia. Instituto de Medicina Tropical "Alexander von Humbldt". Lima, Peru.
National Institutes of Health. National Institute of Neurological Disorders and Stroke. Neuroimmunology Branch. Viral immunology Section. Bethesda, MD, USA.
University of Queensland. Faculty of Medicine. Herston, Australia.
Universidade Federal do Estado do Rio de Janeiro. Escola de Medicina e Cirurgia. Rio de Janeiro, RJ, Brasil / Universidade Federal do Rio de Janeiro. Rio de Janeiro, RJ, Brasil.
Imperial College London. Department of Medicine. Section of Virology. London, UK.
St. Marianna University School of Medicine. Institute of Medical Science. Department of Rare Diseases Research. Kawasaki, Japan / St. Marianna University School of Medicine. Department of Advanced Medical Innovation. Kawasaki, Japan.
Abstract
Background: Urinary dysfunction is one of the main features of human T-cell leukemia virus type 1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). However, a comprehensive assessment of the severity is difficult because a standardized assessment measure is unavailable. Therefore, this study aimed to develop a novel symptom score for the assessment of urinary dysfunction in HAM/TSP. We interviewed 449 patients with HAM/TSP using four internationally validated questionnaires for assessment of urinary symptoms (27 question items in total): the International Prostate Symptom Score; the International Consultation on Incontinence Questionnaire-Short Form; the Overactive Bladder Symptom Score; and the Nocturia Quality-of-Life questionnaire. We developed a symptom score based on the data of 322 patients who did not use urinary catheters by selecting question items from questionnaires focused on descriptive statistics, correlation analysis, and exploratory factor analysis. The score distribution, reliability, and validity of the developed score were evaluated. Results: First, 16 questions related to quality of life, situations, or subjective assessment were omitted from the 27 questions. Exploratory factor analysis revealed that the remaining 11 questions pertained to three factors: frequent urination, urinary incontinence, and voiding symptoms. Three questions, which had similar questions with larger factor loading, were deleted. Finally, we selected eight question items for inclusion in the novel score. The score distribution exhibited no ceiling or floor effect. The Cronbach's alpha (0.737) demonstrated reliable internal consistency. The new score comprised two subscales with acceptable factorial validity (inter-factor correlation coefficient, 0.322): storage symptoms (frequent urination plus urinary incontinence) and voiding symptoms. The correlation between each item and the subscales suggested acceptable construct validity. Conclusions: We developed a novel score, the HAM/TSP-Bladder Dysfunction Symptom Score, and demonstrated its reliability and validity. The applicability of this score to patients using catheters should be examined in future research.
Keywords
Bladder dysfunction
Human T-cell leukemia virus type 1
Human T-cell leukemia virus type 1-associated myelopathy
Neurogenic bladder
Urinary symptom score
Tropical spastic paraparesis
 
Publisher
BMC
Citation
YAMAKAWA, Natsuko et al. Creation and validation of a bladder dysfunction symptom score for HTLV-1-associated myelopathy/tropical spastic paraparesis. Orphanet Journal of Rare Diseases, v. 15, n. 1, p. 1-11, July 2020.
DOI
10.1186/s13023-020-01451-3
ISSN
1750-1172
Notes
Japan Clinical Research Group on HAM/TSP: Takeo Nakayama, Satoshi Kamei, Jun-Ichi Kira, Toshiki Watanabe, Tatsuo Kohriyama, Akihiko Okayama, Atsushi Kawakami, Kenji Yuzawa, Masanori Nakagawa, Tatsufumi Nakamura, Ryuji Kubota, Eiji Matsuura, Koju Kamoi, Takashi Nakajima, Hiroyuki Murai, Kaoru Uchimaru, Yoshio Tsuboi, Yukihiro Namihira, Satoshi Ishihara, Masaaki Niino, Masahiro Nagai, Kunihiko Umekita, Norihiro Takenouchi, Toshio Matsuzaki, Youichi Hokezu, Hideki Nakamura, Takuya Matsushita, Yuji Morio, Hisashi Yonezawa, Takashi Tokashiki, Keiko Tamaki, Hirokuni Sakima, Naoko Yagishita, Tomohiro Matsuo, Junji Yamauchi, Eisuke Inoue, Ayako Takata, Natsumi Araya, Daisuke Hasegawa, Tomoo Sato, Yoshihisa Yamano.