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Table 4 Spearman correlation coefficients between child PKU-QOL and adolescent PKU-QOL and PedsQL scores

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

PKU-QOL scores Child evaluable population (n = 92) Adolescent evaluable population (n = 110)
EF PF SoF ScF EF PF SoF ScF
Self-rated health status - - - - −0.26 −0.23 −0.22 −0.16
Headaches −0.07 −0.25 −0.05 −0.22 −0.23 −0.28 −0.22 −0.26
Stomach aches −0.33 −0.06 −0.06 −0.17 −0.16 −0.23 −0.25 −0.11
Tiredness −0.13 −0.34 −0.21 −0.30 −0.23 −0.22 −0.15 −0.18
Angry −0.38 −0.36 −0.24 −0.30 −0.30 −0.08 −0.27 −0.08
Aggressiveness −0.08 −0.13 −0.00 −0.10 −0.31 −0.20 −0.21 −0.31
Moodiness −0.13 −0.26 −0.11 −0.25 −0.28 −0.10 −0.10 −0.27
Sadness −0.41 −0.33 −0.33 −0.23 −0.31 −0.17 −0.23 −0.16
Anxiety −0.26 −0.05 −0.31 −0.12 −0.27 −0.18 −0.27 −0.10
Lack of concentration −0.15 −0.32 −0.33 −0.36 −0.21 −0.19 −0.27 −0.48
Slow thinking −0.24 −0.45 −0.37 −0.43 −0.32 −0.42 −0.42 −0.36
Emotional impact of PKU −0.45 −0.22 −0.28 −0.33 −0.47 −0.19 −0.31 −0.28
Practical impact of PKU −0.40 −0.24 −0.25 −0.09 −0.29 −0.19 −0.30 −0.28
Social impact of PKU −0.39 −0.38 −0.41 −0.20 −0.35 −0.10 −0.20 −0.15
Overall impact of PKU −0.54 −0.35 −0.41 −0.30 −0.49 −0.21 −0.31 −0.31
Anxiety – blood test −0.13 −0.05 −0.04 0.05 −0.11 −0.16 −0.05 −0.03
Anxiety – blood Phe levels −0.42 −0.25 −0.13 −0.37 −0.37 −0.14 −0.18 −0.25
Adherence to Phe-free protein supplements −0.12 −0.11 0.00 −0.11 −0.13 −0.23 −0.24 −0.26
Practical impact of Phe-free protein supplements −0.23 −0.18 −0.21 −0.16 −0.43 −0.31 −0.36 −0.25
Guilt if poor adherence to Phe-free protein supplements 0.14 0.09 0.01 0.18 −0.11 0.11 0.04 0.08
Relationships within family because of Phe-free protein supplements −0.30 −0.18 −0.18 −0.11 −0.16 −0.11 −0.14 −0.37
Taste – Phe-free protein supplements −0.28 −0.06 −0.10 −0.23 −0.06 0.00 0.08 −0.17
Food temptations −0.32 −0.29 −0.35 −0.14 −0.36 −0.10 −0.24 −0.18
Adherence to dietary protein – restriction −0.03 −0.14 −0.01 −0.11 −0.39 −0.09 −0.29 −0.18
Social impact of dietary protein restriction −0.40 −0.45 −0.40 −0.47 −0.37 −0.19 −0.34 −0.34
Practical impact of dietary protein restriction - - - - −0.44 −0.24 −0.30 −0.40
Overall impact of dietary protein restriction - - - - −0.45 −0.27 −0.33 −0.35
Taste – specialty low-protein food −0.12 0.08 0.13 −0.01 −0.19 −0.03 −0.09 −0.15
Food enjoyment −0.19 −0.23 −0.26 −0.11 0.04 0.03 −0.08 −0.08
Guilt if dietary protein restriction not followed 0.01 −0.08 −0.10 −0.03 −0.24 −0.03 −0.16 −0.03
Overall difficulty following dietary protein restriction −0.32 −0.23 −0.24 −0.21 −0.37 −0.16 −0.19 −0.32
  1. PedsQL: Pediatric Quality-of-Life Inventory; Phe: phenylalanine; PKU: phenylketonuria; QOL: quality of life; EF: Emotional functioning; PF: Physical functioning; SoF: Social functioning; ScF: School functioning.
  2. Moderate correlations (>0.4) are shown in bold.