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Table 2 Distribution of HRQoL for the self-report and parent report in the DCGM-37 and comparison to norm data of chronically ill children

From: Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings

 

Study sample

Norm dataa

Sample vs. norm data: one sample t-test

n

M

[95% CI]

SD

M

SD

p

d

Self-report

 Independence

25

63.5

[55.97; 71.93]

20.42

76.1

18.50

.003

-0.62**

 Emotion

25

64.1

[56.05; 72.23]

19.60

73.9

18.92

.004

-0.50**

 Social inclusion

25

58.3

[49.88; 66.79]

20.48

74.5

18.14

.001

-0.79***

 Social exclusion

25

68.1

[60.02; 76.31]

19.72

84.4

16.24

.001

-0.83***

 Physical limitation

25

51.6

[43.21; 60.12]

20.48

73.9

18.92

.001

-1.09***

 Medical treatment

16

74.8

[58.84; 78.82]

25.30

72.2

22.62

.690

0.10

 DCGM-37 total

25

62.4

[55.55; 69.43]

16.81

76.9

14.80

.001

-0.86***

Parent report

 Independence

44

58.6

[53.40; 63.84]

16.77

76.6

17.25

.001

-1.07***

 Emotion

44

66.9

[60.49; 74.39]

22.55

71.6

20.49

.179

-0.21

 Social inclusion

44

38.3

[33.46; 43.69]

16.48

74.2

17.65

.001

-2.18***

 Social exclusion

44

71.2

[65.57; 77.51]

19.28

80.9

16.79

.002

-0.50**

 Physical limitation

44

51.9

[46.08; 58.37]

19.78

70.1

18.32

.001

-0.92***

 Medical treatment

30

72.7

[58.17; 73.28]

25.38

69.9

22.15

.537

0.11

 DCGM-37 total

44

59.0

[55.51; 62.98]

12.10

74.9

14.55

.001

-1.31***

  1. Note. Possible range 0–100. Higher scores indicate better HRQoL. CI Confidence interval
  2. aNorm data of chronically ill children [33]
  3. **p < .01
  4. ***p < .001 d = Cohen’s d