Table 3 Descriptive statistics of measures used to create caregiver-burden groups (N = 566)

DMD caregiver impact

Practical impact

50

10

36

81

Symptom impact

50

10

24

67

Lifestyle impact

50

10

28

74

Social impact

50

10

28

73

Physical impact

50

10

34

77

Emotional impact

50

10

33

74

Financial impact

50

10

32

74

Positive emotions^a

50

10

15

64

PROMIS parent proxy measures of DMD child's disability

Fatigue impact

50.6

9.5

34

73

Strength impact

50.5

9.5

35

68

Negative affect

50.0

9.6

32

76

Sleep-device symptoms

8.8

3.7

4

18

Cognitive function^a

50.5

9.4

22

63

Upper extremity function^a

50.3

9.6

34

66

Positive emotions^a

49.9

9.2

21

68

Mobility^a

31.9

13.6

13

65

Out-of-pocket costs

Mean

SD

Min

Max

Count of expenditures

3.1

2.2

0

8

Frequency

%

Modified home entrance

380

67%

Modified bathroom

303

54%

Modified inside home doorways

278

49%

Purchased handicap-accessible van

259

46%

Modified bedroom

241

43%

Modified kitchen

144

25%

Installed elevator

81

14%

Moved to or build new home

26

5%

Installed ceiling lift

16

3%

Purchased scooter

12

2%

Other

4

1%