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

Journal of Patient-Reported Outcomes

Table 3 Demographics characteristics of patients with Phenylketonuria in the study, according to age group

Variable	Total sample n (%)	< 18 years of age (n = 11) n (%)	≥ 18 years of age (n = 12) n (%)	p
Sex				1.000^a
Woman	9 (39.1)	4 (44.4)	5 (55.6)
Man	14 (60.9)	7 (50.0)	7 (50.0)
Mothers’ level of education				0.193 ^a
4 years or less	8 (34.8)	2 (25.0)	6 (75.0)
5 years or more	15 (65.2)	9 (60.0)	6 (40.0)
Fathers’ level of education (n = 19)^§				0.319^a
4 years or less	6 (31.6)	2 (33.3)	4 (66.7)
5 years or more	13 (68.4)	9 (69.2)	4 (30.8)
PKU Classification^¥				0.414^a
Classical	11 (47.8)	4 (36.4)	7 (63.6)
Mild	12 (52.2)	7 (58.3)	5 (41.7)
Beginning of treatment				0.667^a
≤ 3 months of age	15 (65.2)	8 (53.3)	7 (46.7)
> 3 months of age	8 (34.8)	3 (37.5)	5 (62.5)
Current Phe Adherence(n = 22)^£				0.198^a
Good	12 (54.5)	8 (66.7)	4 (33.3)
Poor	10 (45.5)	3 (30.0)	7 (70.0)
Current Median Phe Adherence (n = 22)^£				0.670^a
Good	10 (45.5)	6 (60.0)	4 (40.0)
Poor	12 (54.5)	5 (41.7)	7 (58.3)
Current Phe level (n = 22)^£ mg/dL Md [IQR]	8.8 [6–14.3]	7.3 [5.9–8.9]	13.2 [7.4–17.3]	0.017^b
Current Median Phe level (n = 22)^£ mg/dL Md [IQR]	8.3 [6.9–14.4]	7.8 [5.6–8.3]	13.2 [7.2–18.7]	0.039^b

Notes: Phe Phenylalanine; Level of education = years of schooling. 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. § Four patients did not answer the question on the paternal educational achievement. ¥ One patient with Undefined PKU type was classified as Classical PKU. £ One patient had no information regarding recent adherence
^aFisher’s Exact test
^bMann-Whitney test