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Table 6 Spearman correlation coefficients between Adult PKU-QOL and SF-36 scores in the adult evaluable population (n = 104)

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 SF-36 scores
PF RP BP GH VT SF RE MH
Self-rated health status −0.37 −0.22 −0.30 −0.58 −0.57 −0.36 −0.29 −0.50
Headaches −0.20 −0.26 −0.39 −0.31 −0.29 −0.41 −0.30 −0.35
Stomach aches −0.17 −0.19 −0.40 −0.30 −0.34 −0.26 −0.33 −0.37
Tiredness −0.28 −0.34 −0.30 −0.40 −0.52 −0.40 −0.32 −0.39
Lack of concentration −0.25 −0.59 −0.37 −0.40 −0.52 −0.51 −0.56 −0.60
Slow thinking −0.27 −0.36 −0.29 −0.36 −0.32 −0.44 −0.47 −0.43
Trembling hands −0.16 −0.21 −0.19 −0.31 −0.31 −0.19 −0.25 −0.28
Irritability −0.23 −0.44 −0.32 −0.29 −0.20 −0.31 −0.40 −0.39
Aggressiveness −0.22 −0.36 −0.21 −0.24 −0.22 −0.31 −0.31 −0.24
Moodiness −0.21 −0.40 −0.45 −0.38 −0.41 −0.54 −0.50 −0.53
Sadness −0.21 −0.44 −0.48 −0.49 −0.39 −0.61 −0.56 −0.66
Anxiety −0.16 −0.31 −0.26 −0.31 −0.29 −0.37 −0.43 −0.47
Emotional impact of PKU −0.41 −0.31 −0.35 −0.43 −0.34 −0.35 −0.31 −0.39
Practical impact of PKU −0.05 −0.38 −0.18 −0.38 −0.38 −0.38 −0.47 −0.38
Social impact of PKU −0.34 −0.32 −0.30 −0.40 −0.30 −0.48 −0.35 −0.39
Overall impact of PKU −0.27 −0.42 −0.42 −0.53 −0.32 −0.53 −0.45 −0.48
Anxiety – blood test 0.05 −0.03 −0.27 −0.16 −0.12 −0.32 −0.22 −0.25
Anxiety – Phe levels −0.19 −0.11 −0.21 −0.28 −0.19 −0.25 −0.17 −0.15
Anxiety – Phe levels during pregnancy −0.11 0.11 −0.03 −0.02 −0.00 −0.05 0.06 −0.13
Financial impact of PKU −0.11 −0.05 −0.05 0.14 0.03 0.01 0.03 0.08
Information on PKU −0.08 −0.11 −0.15 −0.12 −0.08 −0.17 −0.22 −0.19
Adherence to Phe-free protein supplements −0.10 −0.28 −0.25 −0.14 −0.29 −0.35 −0.38 −0.18
Practical impact of Phe-free protein supplements −0.13 −0.13 −0.11 −0.41 −0.43 −0.33 −0.25 −0.37
Guilt if poor adherence to Phe-free protein supplements −0.12 −0.16 −0.23 −0.22 −0.13 −0.30 −0.13 −0.23
Relationships within family because of Phe-free protein supplements −0.02 −0.01 −0.20 −0.15 −0.13 −0.13 0.01 −0.09
Taste – Phe-free protein supplements 0.07 0.12 0.04 −0.24 −0.25 −0.18 −0.00 0.00
Food temptations −0.14 −0.40 −0.19 −0.21 −0.25 −0.37 −0.31 −0.33
Adherence to dietary protein restriction −0.03 −0.29 −0.13 −0.06 −0.17 −0.24 −0.29 −0.29
Social impact of dietary protein restriction −0.12 −0.40 −0.20 −0.43 −0.44 −0.50 −0.50 −0.49
Practical impact of dietary protein restriction −0.21 −0.25 −0.11 −0.38 −0.59 −0.44 −0.39 −0.46
Overall impact of dietary protein restriction −0.23 −0.33 −0.17 −0.45 −0.57 −0.54 −0.44 −0.49
Taste – specialty low-protein food −0.09 −0.31 −0.27 −0.33 −0.25 −0.34 −0.41 −0.33
Food enjoyment −0.19 −0.28 −0.16 −0.36 −0.34 −0.41 −0.38 −0.29
Guilt if dietary protein restriction not followed −0.17 −0.15 −0.21 −0.30 −0.10 −0.33 −0.12 −0.16
Overall difficulty following dietary protein restriction −0.33 −0.47 −0.21 −0.38 −0.46 −0.46 −0.34 −0.33
  1. Phe: phenylalanine; PKU: phenylketonuria; QOL: quality of life; SF-36: 36-item Short Form; PF: Physical functioning; RP: Role Physical; BP: Bodily Pain; GH: General health; VT: Vitality; SF: Social Functioning; RE: Role Emotional; MH: Mental Health.
  2. Correlations between Adult PKU-QOL and SF-36 scores were low to moderate. Moderate correlations (>0.4) are shown in bold.