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Table 3 Disutility estimates of parental spillover quantifying health-related quality of life losses due to childhood conditions

From: Health utilities and parental quality of life effects for three rare conditions tested in newborns

  N Disutility Spillover decrement relative to child disutility
Mean 95% CIa Percent 95% CI
Krabbe Disease
 Early Stage Illness, 6 months 167 0.152 0.110–0.195 32.4 26.9–36.7
 Advanced Stage Illness, 6 months 167 0.190 0.141–0.238 50.8 44.6–55.3
 Early Stage Illness, 8 years 168 0.136 0.096–0.177 24.8 19.6–29.2
 Advanced Stage Illness, 8 yr 168 0.163 0.119–0.208 37.0 31.3–41.6
Phenylketonuria
 Less Adherent to Diet, 8 yr 170 0.120 0.079–0.160 21.3 15.6–25.7
 More Adherent to Diet, 8 yr 171 0.110 0.072–0.148 17.2 12.4–21.3
Pompe Disease
 Severe Symptoms, 6 months 170 0.180 0.129–0.230 45.1 37.8–50.3
 Mild Symptoms, 8 yr 171 0.072 0.042–0.103 9.0 5.6–12.2
 Moderate Symptoms, 8 yr 169 0.162 0.116–0.208 39.1 32.7–43.8
 Severe Symptoms, 8 yr 171 0.131 0.090–0.173 28.1 22.1–33.0
 ERT Treatment, 8 yr 169 0.155 0.110–0.200 32.6 26.4–37.5
  1. aBootstrapped