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Table 5 Valuation of benefits and harms

From: Public support for neonatal screening for Pompe disease, a broad-phenotype condition

Child's perspective

Parents' perspective

 

Pompe a

neutral

p b

 

Pompe

neutral

p

false positive scenario

       

effect on child 1st yearc

3.47

3.29

0.205

harm to parents

2.05

1.96

0.371

effect on child lifetimec

3.60

3.50

0.502

    

late-onset scenario

       

effect on child 1st yearc

3.57

3.44

0.444

harm to parents

1.93

1.73

0.029

effect on child lifetime

3.93

3.47

0.017

    

harm to childd

2.41

2.18

0.011

    
  1. a mean scores; measures of effect scaled 1-5, measures of harm scaled 1-3, with harm at the low end and benefit at the high end of each scale. Items in this table had between 4 and 9 missing values
  2. b chi square test for trend
  3. c exact chi square test for trend
  4. d '(e.g. discrimination)'
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172