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@article{Yamakawa:2020:10.1186/s13023-020-01451-3,
author = {Yamakawa, N and Yagishita, N and Matsuo, T and Yamauchi, J and Ueno, T and Inoue, E and Takata, A and Nagasaka, M and Araya, N and Hasegawa, D and Coler-Reilly, A and Tsutsumi, S and Sato, T and Araujo, A and Casseb, J and Gotuzzo, E and Jacobson, S and Martin, F and Puccioni-Sohler, M and Taylor, GP and Yamano, Y and Japan, Clinical Research Group on HAMTSP},
doi = {10.1186/s13023-020-01451-3},
journal = {Orphanet Journal of Rare Diseases},
pages = {175--175},
title = {Creation and validation of a bladder dysfunction symptom score for HTLV-1-associated myelopathy/tropical spastic paraparesis},
url = {http://dx.doi.org/10.1186/s13023-020-01451-3},
volume = {15},
year = {2020}
}

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TY  - JOUR
AB  - 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 nove
AU  - Yamakawa,N
AU  - Yagishita,N
AU  - Matsuo,T
AU  - Yamauchi,J
AU  - Ueno,T
AU  - Inoue,E
AU  - Takata,A
AU  - Nagasaka,M
AU  - Araya,N
AU  - Hasegawa,D
AU  - Coler-Reilly,A
AU  - Tsutsumi,S
AU  - Sato,T
AU  - Araujo,A
AU  - Casseb,J
AU  - Gotuzzo,E
AU  - Jacobson,S
AU  - Martin,F
AU  - Puccioni-Sohler,M
AU  - Taylor,GP
AU  - Yamano,Y
AU  - Japan,Clinical Research Group on HAMTSP
DO  - 10.1186/s13023-020-01451-3
EP  - 175
PY  - 2020///
SN  - 1750-1172
SP  - 175
TI  - Creation and validation of a bladder dysfunction symptom score for HTLV-1-associated myelopathy/tropical spastic paraparesis
T2  - Orphanet Journal of Rare Diseases
UR  - http://dx.doi.org/10.1186/s13023-020-01451-3
UR  - https://www.ncbi.nlm.nih.gov/pubmed/32620176
UR  - http://hdl.handle.net/10044/1/81147
VL  - 15
ER  -

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