Skip to main content
. 2024 May 3;19:186. doi: 10.1186/s13023-024-03178-x

Table 4.

The EQ-5D-5L health utility score (HUS) and EQ-VAS score of various subgroups (clinical characteristics)

Variables N HUS VAS score
Mean SD Mean SD
Initial symptom
Hemoglobinuria
Yes 210 0.75 0.22 60.42 19.63
No 119 0.78 0.19 66.48 17.83
Anemia (Fatigue, Tachycardia, Shortness of breath, Headache)
Yes 201 0.73 0.23 60.30 18.95
No 128 0.82 0.18 66.23 19.09
Jaundice
Yes 154 0.74 0.22 60.95 19.68
No 175 0.78 0.20 64.07 18.69
Pancytopenia, bone marrow hematopoietic failure
Yes 123 0.73 0.24 61.38 20.32
No 206 0.78 0.19 63.34 18.50
Abdominal pain
Yes 58 0.68 0.28 56.72 20.91
No 271 0.78 0.19 63.87 18.61
Back pain
Yes 47 0.61 0.33 54.36 19.15
No 282 0.79 0.18 63.99 18.89
Erectile dysfunction
Yes 37 0.76 0.24 63.92 17.94
No 292 0.76 0.21 62.45 19.37
Dysphagia
Yes 27 0.66 0.29 56.37 15.91
No 302 0.77 0.20 63.17 19.39
Cognitive disorder
Yes 5 0.81 0.13 53.40 33.31
No 324 0.76 0.22 62.75 18.95
Several common complications during the past year
Stones
Yes 50 0.71 0.21 60.02 22.24
No 279 0.77 0.21 63.08 18.61
Thrombosis
Yes 24 0.59 0.32 50.42 24.93
No 305 0.78 0.20 63.57 18.38
Renal failure
Yes 9 0.58 0.33 55.11 22.05
No 320 0.77 0.21 62.82 19.11
Pulmonary hypertension
Yes 8 0.64 0.24 48.88 23.64
No 321 0.77 0.21 62.95 18.99
Bone marrow failure (BMF)
Yes 7 0.44 0.28 40.14 10.88
No 322 0.77 0.21 63.10 19.05
Necrosis of the femoral head
Yes 4 0.75 0.11 53.75 22.04
No 325 0.76 0.22 62.72 19.17
Misdiagnosis
Yes 111 0.75 0.24 62.68 17.83
No 218 0.77 0.20 62.58 19.90
The latest pathological grade
Classic PNH 239 0.77 0.21 63.06 18.07
PNH in the setting of another specified bone marrow disorder 73 0.74 0.21 58.81 21.31
Sub-clinical PNH 17 0.81 0.23 72.59 21.87
Total 329 0.76 0.21 62.61 19.20

HUS: Health utility score

VAS: Visual analogue scale

SD: Standard deviation