Table 4.
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 |
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.
Moderate correlations (>0.4) are shown in bold.