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Table 5 Spearman correlation coefficients between Parent PKU-QOL and CHQ-PF28 scores in the parent evaluable population (n = 253)

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

  CHQ-PF28 scores
PKU-QOL scores PF RP GH BP PiT PiE RE SE MH Be FA FC CH
Child health status −0.24 −0.24 −0.43 −0.26 −0.34 −0.39 −0.09 −0.37 −0.23 −0.37 −0.37 −0.26 0.15
Headaches −0.06 −0.10 −0.29 −0.32 −0.18 −0.21 −0.12 −0.25 −0.29 −0.25 −0.22 −0.16 0.16
Stomach aches −0.11 −0.06 −0.18 −0.40 −0.11 −0.23 −0.02 −0.08 −0.27 −0.15 −0.17 −0.03 0.17
Tiredness −0.24 −0.21 −0.28 −0.28 −0.34 −0.36 −0.19 −0.26 −0.35 −0.28 −0.23 −0.11 −0.00
Lack of concentration −0.10 −0.07 −0.23 −0.23 −0.20 −0.22 −0.28 −0.36 −0.33 −0.57 −0.22 −0.17 −0.06
Slow thinking −0.16 −0.10 −0.29 −0.20 −0.20 −0.23 −0.40 −0.37 −0.36 −0.47 −0.26 −0.17 0.03
Irritability −0.12 −0.09 −0.28 −0.16 −0.28 −0.36 −0.23 −0.42 −0.45 −0.54 −0.27 −0.29 0.03
Aggressiveness −0.16 −0.22 −0.19 −0.12 −0.26 −0.28 −0.31 −0.31 −0.37 −0.49 −0.28 −0.24 −0.09
Moodiness −0.14 −0.18 −0.21 −0.26 −0.32 −0.43 −0.31 −0.40 −0.43 −0.53 −0.37 −0.24 −0.07
Sadness −0.16 −0.10 −0.25 −0.32 −0.36 −0.30 −0.36 −0.38 −0.43 −0.35 −0.28 −0.16 0.03
Anxiety −0.18 −0.15 −0.24 −0.18 −0.24 −0.16 −0.34 −0.39 −0.41 −0.20 −0.21 −0.21 0.01
Emotional impact of PKU −0.14 −0.15 −0.33 −0.21 −0.23 −0.40 −0.04 −0.22 −0.29 −0.26 −0.29 −0.27 −0.03
Practical impact of PKU −0.20 −0.18 −0.35 −0.21 −0.33 −0.39 −0.15 −0.24 −0.37 −0.34 −0.42 −0.25 0.07
Social impact of PKU −0.20 −0.18 −0.29 −0.24 −0.26 −0.35 −0.20 −0.25 −0.33 −0.31 −0.37 −0.36 −0.03
Overall impact of PKU −0.21 −0.20 −0.39 −0.26 −0.31 −0.46 −0.12 −0.29 −0.37 −0.35 −0.44 −0.34 −0.02
Anxiety – blood test −0.15 −0.13 −0.14 −0.05 −0.21 −0.22 −0.03 −0.01 −0.15 −0.08 −0.27 −0.06 0.08
Impact of anxiety – blood test −0.19 −0.20 −0.24 −0.10 −0.26 −0.26 −0.09 0.02 −0.14 −0.05 −0.29 −0.03 0.26
Anxiety – blood Phe levels −0.06 −0.06 −0.25 −0.13 −0.13 −0.42 −0.09 −0.06 −0.28 −0.24 −0.19 −0.09 0.05
Financial impact of PKU −0.12 −0.05 −0.20 −0.19 −0.19 −0.29 −0.06 −0.05 −0.15 −0.26 −0.24 −0.20 0.03
Information on PKU −0.14 −0.19 −0.25 −0.26 −0.14 −0.24 −0.14 −0.30 −0.16 −0.24 −0.19 −0.27 0.00
Adherence to Phe-free protein supplements −0.09 −0.16 −0.10 −0.13 −0.11 −0.08 −0.22 −0.24 −0.21 −0.28 −0.12 −0.07 0.03
Management of Phe-free protein supplements −0.03 −0.12 −0.09 −0.10 −0.28 −0.21 −0.05 −0.07 −0.18 −0.28 −0.22 −0.14 −0.06
Practical impact of Phe-free protein supplements −0.15 −0.23 −0.19 −0.12 −0.17 −0.18 −0.04 −0.06 −0.25 −0.10 −0.38 −0.26 −0.03
Guilt if poor adherence to Phe-free protein supplements −0.14 −0.07 −0.27 −0.09 −0.10 −0.27 −0.11 0.08 −0.20 −0.10 −0.14 −0.05 0.15
Relationships within family because of Phe-free protein supplements −0.17 −0.21 −0.15 −0.26 −0.33 −0.22 −0.15 −0.16 −0.24 −0.34 −0.32 −0.23 −0.02
Adherence to dietary protein restriction −0.04 −0.09 −0.17 −0.08 −0.19 −0.11 −0.14 −0.15 −0.09 −0.24 −0.16 −0.10 0.07
Management of dietary protein restriction −0.12 −0.16 −0.26 −0.25 −0.30 −0.40 −0.24 −0.34 −0.35 −0.49 −0.41 −0.29 −0.04
Practical impact of dietary protein restriction −0.15 −0.24 −0.24 −0.28 −0.30 −0.33 −0.10 −0.30 −0.32 −0.33 −0.46 −0.39 −0.14
Food enjoyment −0.11 −0.06 −0.19 −0.28 −0.21 −0.14 −0.07 −0.26 −0.27 −0.24 −0.28 −0.28 0.07
Guilt if dietary protein restriction not followed −0.15 −0.04 −0.15 −0.07 −0.05 −0.31 −0.12 −0.00 −0.15 −0.07 −0.12 −0.04 0.04
  1. CHQ-PF: Child Health Questionnaire–Parent Form; Phe: phenylalanine; PKU: phenylketonuria; QOL: quality of life; PF: Physical functioning; RP: Role/Social Physical; GH: General health; BP: Bodily Pain; PiT: Parent impact Time; PiE: Parent impact Emotional; RE: Role/Social Emotional; SE: Self-Esteem; MH: Mental Health; Be: Behaviour; FA: Family Activity; FC: Family Cohesion; CH: Change in Health.
  2. Moderate correlations (>0.4) are shown in bold.