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Table 3 Utility values of patients treated with standard care using the UK EQ-5D-5L value set

From: Investigating health-related quality of life in rare diseases: a case study in utility value determination for patients with CLN2 disease (neuronal ceroid lipofuscinosis type 2)

Disease stage Standard care
Mean value Standard error Median value Minimum value Maximum value
6 1.000 0.000 1.000 1.000 1.000
5 0.814 0.032 0.846 0.608 0.901
4 0.660 0.036 0.665 0.447 0.801
3 0.327 0.069 0.367  − 0.102 0.522
2 0.174 0.065 0.261  − 0.137 0.329
1 0.158 0.053 0.228  − 0.137 0.329
0  − 0.140 0.049  − 0.206  − 0.276 0.073
0 + VL  − 0.082 0.061  − 0.120  − 0.276 0.206
0 + VL + PC  − 0.124 0.066  − 0.213  − 0.281 0.191
  1. Disease progression increases with decreasing disease stage. Utility values are given on a scale where 1 is equivalent to perfect health, and 0 equivalent to death. UK value set
  2. PC, palliative care; VL, vision loss