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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.