Orphanet Journal of Rare Diseases

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
Disease stage	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

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
PC, palliative care; VL, vision loss

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ISSN: 1750-1172

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