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Table 5 Differences Phenylketonuria Perceived Barrier to Treatment Inventory scores between patients’ demographic characteristics

From: Development of an inventory to assess perceived barriers related to PKU treatment

VariablePhenylketonuria Perceived Barrier to Treatment Inventory scores Mdn [IQR]Mann-Whitney test (p)
Age group 20.500 (0.005)
 Caregivers of patients 6 to 12 and patients 13 to 17 y.o. (n = 11)4 [3.0–5.0] 
 18 years old or older (n = 12)9 [7.3–11.8] 
Current Phe Adherencea 20.000 (0.009)
 Good (n = 12)4 [3.0–8.0] 
 Poor (n = 10)9.5 [5.0–13.3] 
Current Median Phe Adherencea 33.000 (0.073)
 Good (n = 10)4.5 [2.8–8.5] 
 Poor (n = 12)7.5 [5.0–11.8] 
Sex 46.500 (0.295)
 Woman (n = 9)5 [3.5–8.0] 
 Man (n = 14)7.5 [3.8–11.3] 
Mothers’ level of education 43.000 (0.283)
 4 years or less (n = 8)9 [4.3–11.5] 
 5 to 11 years (n = 15)5 [4.0–8.0] 
Fathers’ level of educationb 24.000 (0.185)
 4 years or less (n = 6)9 [4.5–11.8] 
 5 to 11 years (n = 13)5 [3.5–8.0] 
PKU Classification c 49.500 (0.306)
 Classical (n = 11)8 [4.0–12] 
 Mild (n = 12)5 [3.3–9.5] 
Beginning of treatment 59.000 (0.948)
  ≤ 3 months of age (n = 15)7 [4.0–10.0] 
  > 3 months of age (n = 8)5 [3.3–10.8] 
  1. Notes: PKU Phenylketonuria. Mdn Median. IQR Interval Interquartile Range. Phe Phenylalanine. Current Phe level = Phe level collected prior to the study. Current Median Phe level = median of Phe level collected in the last 12 months prior to the study. Level of education = years of schooling. a One patient had no information regarding recent adherence. bFour patients did not answer the question on the paternal educational achievement. c One patient with Undefined PKU type was classified as Classical PKU