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Table 1 Clinical attributes of the HAM/TSP patients enrolled in this study (n = 383)

From: Nation-wide epidemiological study of Japanese patients with rare viral myelopathy using novel registration system (HAM-net)

Time-Points (Years) Median (IQR)
 Age at Onset 45 (32 – 56)
 Age at Diagnosis 53 (42 – 62)
 Age (at Presenta) 63 (56 – 69)
 Diagnosis Delay (Time from Onset to Diagnosis) 5 (1 – 12)
 Disease Duration (Time from Onset to Presenta) 17 (8 – 26)
Scales/Surveys (Scores) Median (IQR)
 OMDS (Range: 0 – 13) 5.0 (5.0 – 7.0)
 IPEC-1 Gait Subsection (Range: 0 – 11) 4.0 (3.0 – 8.0)
 ICIQ-SF (Range: 0 – 21) 6.0 (0.0 – 11.0)
 I-PSS (Range: 0 – 30) 14.5 (6.0 – 22.0)
 OABSS (Range: 0 – 15) 6.0 (2.3 – 10.0)
 N-QOL (Range: 0 – 100) 91.7 (74.5 – 100.0)
 HAQ-DI (Range: 0 – 3) 1.1 (0.8 – 1.6)
 SF-36 Physical Functioning (National Average ± SD: 50 ± 10)b -3.5 (-10.7 – 14.5)
 SF-36 General Health (National Average ± SD: 50 ± 10)b 38.9 (32.5 – 45.8)
Inquiries Responses Subjects (Percentage)
 Sex: Female 284 (74.2 %)
  Male 99 (25.8 %)
 Initial Symptoms (inclusive): Gait Disturbance 313 (81.9 %)
  Urinary Disturbance 147 (38.5 %)
  Sensory Disturbance (in legs) 53 (13.9 %)
  Other 115 (30.0 %)
 History of Blood Transfusion: Yes (Total) 73 (19.1 %)
  Yes, Pre-1986 57 (14.9 %)
  Unknown 3 (0.8 %)
 Urinary Dysfunction: No Symptoms 29 (7.6 %)
  Symptoms or Using Medication 234 (61.3 %)
  Using Catheters 108 (28.3 %)
  Other Management Strategy 11 (2.9 %)
 Bowel Dysfunction: No Symptoms 87 (22.8 %)
  Symptoms or Using Medication 256 (67.0 %)
  Using Enemas 33 (8.6 %)
  Other Management Strategy 6 (1.6 %)
 Leg Numbness: None 125 (32.7 %)
  Occasional 73 (19.1 %)
  Severe 184 (48.2 %)
 Leg Pain: None 215 (56.3 %)
  Occasional 78 (20.4 %)
  Severe 89 (23.3 %)
  1. Data are summarized using the median and interquartile range (IQR) or the number of subjects and the percentage of total subjects (%). The full names of the scales and surveys shown are as follows: Osame Motor Disability Score (OMDS), Health Assessment Questionnaire – Disability Index (HAQ-DI), Insituto de Pesquisa Clinica Evandro Chagas Disability Score (IPEC)-1, International Consultation on Incontinence Questionnaire – Short Form (ICIQ-SF), International Prostate Symptom Score (I-PSS), Overactive Bladder Symptom Score (OABSS), Nocturia Quality of Life (N-QOL), and MOS 36-Item Short-Form Health Survey (SF-36). Higher scores on N-QOL and SF-36 indicate better health, whereas the opposite is true for all other scales and surveys. n values vary between n = 363 and n = 383 due to incomplete data
  2. aPresent is defined as the time of the subject’s initial HAM-net interview
  3. bThe median values for the remaining six SF-36 sub-scores were all within one standard deviation of the national average (40 – 60) and are not shown in this table