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