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Table 3 Scores from generic QOL instruments (PedsQL, SF-36 and CHQ-PF28) in the study samples and in the US general population

From: Assessment of the impact of phenylketonuria and its treatment on quality of life of patients and parents from seven European countries

Generic QOL instruments

Study samples

US normative data samples

PedsQL scores – Mean (SD)

Child Sample (N = 92)

(N = 5972)a

 Physical functioning score

88.9 (10.7)

86.9 (13.9)

 Emotional functioning score

78.8 (16.9)

78.2 (18.6)

 Social functioning score

91.9 (12.6)

84.0 (17.0)

 School functioning score

80.3 (14.0)

80.0 (17.0)

 Psychosocial health summary score

83.7 (11.1)

80.7 (14.7)

 PedsQL total scale score

85.5 (9.8)

82.9 (13.2)

PedsQL scores – Mean (SD)

Adolescent Sample (N = 110)

(N = 5972)a

 Physical functioning score

88.8 (11.1)

86.9 (13.9)

 Emotional functioning score

81.0 (16.2)

78.2 (18.6)

 Social functioning score

90.9 (14.0)

84.0 (17.0)

 School functioning score

77.1 (15.6)

80.0 (17.0)

 Psychosocial health summary score

83.1 (11.9)

80.7 (14.7)

 PedsQL total scale score

85.1 (10.5)

82.9 (13.2)

SF-36 scores – Mean (SD)

Adult Sample (N = 104)

(N = 7069)b

 Physical Functioning

95.0 (10.2)

80.6 (25.1)

 Role-Physical

86.2 (19.3)

80.8 (25.5)

 General Health

77.8 (18.2)

70.1 (21.3)

 Bodily Pain

83.9 (20.5)

70.1 (24.3)

 Role-Emotional

83.3 (22.6)

86.3 (22.5)

 Mental Health

71.8 (19.1)

75.2 (18.4)

 Vitality

61.7 (19.1)

58.8 (20.7)

 Social Functioning

84.4 (21.5)

83.7 (23.6)

 Mental Component Scale

46.8 (10.8)

49.9 (10.1)

 Physical Component Scale

55.9 (5.5)

50.0 (10.0)

CHQ-PF28 – Mean (SD)

Parent Sample (N = 253)

(N = 391)c

 Physical Functioning

95.3 (14.3)

95.0 (16.2)

 Role/Social Limitations – Physical

96.1 (14.4)

93.7 (19.7)

 General Health Perceptions

70.5 (17.6)

74.0 (19.8)

 Bodily Pain/Discomfort

83.0 (18.8)

81.3 (19.7)

 Parental Impact – Time

87.9 (21.3)

88.4 (20.9)

 Parental Impact – Emotional

70.4 (28.8)

81.3 (18.4)

 Role/Social Limitations – Emotional/Behavioral

90.9 (21.3)

92.5 (19.1)

 Self Esteem

79.4 (19.1)

80.1 (19.1)

 Mental Health

77.0 (19.0)

79.7 (15.5)

 Behavior

73.1 (18.9)

70.8 (18.7)

 Family Activities

88.3 (19.7)

91.1 (18.9)

 Family Cohesion

72.5 (22.2)

72.4 (21.6)

 Physical Summary Score

53.0 (7.8)

53.2 (9.5)

 Psychosocial Summary Score

49.3 (10.6)

51.1 (9.6)

  1. SD standard deviation, PedsQL pediatric quality of life inventory, SF-36 36-item short form, CHQ-PF28 child health questionnaire parent form 28 items, US United States
  2. Note: higher scores represent more positive outcome for each instrument
  3. aData from Varni et al. 2003 [35]
  4. bData from Ware et al. 2007 [36]
  5. cData from HealthActCHQ. 2008 [37]