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Table 2 Demographic characteristics in the patient and parent populations of the validation study

From: Development and psychometric validation of measures to assess the impact of phenylketonuria and its dietary treatment on patients’ and parents’ quality of life: the phenylketonuria – quality of life (PKU-QOL) questionnaires

 

Child (9–11 yo) evaluable population

Adolescent (12–17 yo) evaluable population

Adult (>18 yo) evaluable population

Parent evaluable population

Children (0–18 yo) of the parent population

(n = 92)

(n = 110)

(n = 104)

(n = 253)

(n = 253)

Age (years)

n (missing)

90 (2)

110 (0)

101 (3)

244 (9)

251 (2)

Mean (SD)

9.8 (0.8)

14.5 (1.6)

25.8 (6.6)

41.6 (6.5)

10.7 (4.2)

Min – Max

9.0 11.0

12.0 17.0

18.0 45.0

24.0 66.0

0.0 17.0

Sex

Male, n (%)

43 (46.7)

56 (50.9)

38 (36.5)

69 (27.3)

126 (49.8)

PKU severity

Classical PKU*, n (%)

66 (71.7)

75 (68.2)

67 (64.4)

-

172 (68.0)

  1. SD: standard deviation.
  2. *Classical PKU defined as Phe level at diagnosis >1200 μmol/L.