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. 2025 Aug 26;20:456. doi: 10.1186/s13023-025-03987-8

Table 2.

EQ5D Utility Index, VAS, and dimension scores of unaffected family members versus norms

EQ5D Scores Fathers (n = 29) Mothers (n = 52) Partners (n = 6) Unaffected Siblings (≥ 18 years) (n = 9)
Utility Index1 0.94 (0.82–1.0) 0.82 (0.53–0.94) 0.73 (0.64–0.83) 0.94 (0.88–1.0)
Reference Norm3 0.88 0.88 0.88 0.88
P-Value > 0.05 < 0.001 < 0.05 > 0.05
VAS1 80.0 (70.0–90.0) 80.0 (68.2–90.0) 65.5 (60.2–74.5) 80.0 (74.0–81.0)
Reference Norm 80.0 80.0 80.0 80.0
P-Value > 0.05 > 0.05 < 0.05 > 0.05
Mobility2 17.4% 23.1% 33.3% 11.1%
Reference Norm 29.4% 29.4% 29.4% 29.4%
P-Value > 0.05 > 0.05 > 0.05 > 0.05
Self-Care2 10.7% 17.3% 16.7% 11.1%
Reference Norm 13.9% 13.0% 13.0% 13.0%
P-Value > 0.05 > 0.05 > 0.05 > 0.05
Usual Activities2 24.2% 38.5% 50.0% 33.3%
Reference Norm 31.2% 31.2% 31.2% 31.2%
P-Value > 0.05 > 0.05 > 0.05 > 0.05
Pain/Discomfort2 38.0% 55.8% 66.7% 22.2%
Reference Norm 62.9% 62.9% 62.9% 62.9%
P-Value < 0.05 > 0.05 > 0.05 < 0.05
Depression/Anxiety2 44.9% 73.1% 100.0% 44.4%
Reference Norm 51.1% 51.1% 51.1% 51.1%
P-Value > 0.05 < 0.005  < 0.001  > 0.05

1Data presented as Median (IQR). 2Data presented as a percentage reporting any problems on the dimension. 3Reference norms are based on the U.S.A. EQ5D-5L scores. Significant differences from the reference norms are marked in bold

VAS, visual analog scale