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

Journal of Patient-Reported Outcomes

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

Variable	Phenylketonuria 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 Adherence^a		20.000 (0.009)
Good (n = 12)	4 [3.0–8.0]
Poor (n = 10)	9.5 [5.0–13.3]
Current Median Phe Adherence^a		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 education^b		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]

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