| |
PROMIS-10, Physical
|
50.3
|
10.2
|
20
|
68
|
48.3
|
8.0
|
27
|
68
|
< 0.0005
|
0.01
|
| |
PROMIS-10, Mental
|
49.0
|
10.1
|
21
|
68
|
50.3
|
8.0
|
25
|
68
|
0.02
|
0.01
|
| |
NeuroQOL Positive Affect and Well-Being
|
53.4
|
6.3
|
30
|
68
|
55.1
|
6.8
|
26
|
68
|
< 0.0005
|
0.02
|
| |
Ryff Environmental Mastery
|
30.1
|
6.6
|
13
|
42
|
30.9
|
6.8
|
11
|
42
|
0.045
|
0.003
|
| |
Resilience
|
0.0
|
1.0
|
-6
|
5
|
0.0
|
1.0
|
-7
|
5
|
0.78
| |
| |
Life Stress Questionnare
|
35.8
|
13.5
|
18
|
78
|
35.9
|
14.2
|
18
|
90
|
0.85
| |
| |
Difficulty Paying Bills
|
2.2
|
1.1
|
1
|
5
|
1.9
|
1.1
|
1
|
5
|
< 0.0005
|
0.02
|
|
Indirect Costs
| |
Mean
|
SD
|
Min
|
Max
| | | | | | |
| |
Count of accomodations
|
3.1
|
2.2
|
0
|
8
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| | |
Frequency
|
%
| | | | | | | | |
| |
Modified home entrance
|
379
|
67%
| | |
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Modified bathroom
|
300
|
53%
| | |
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Modified inside home doorways
|
277
|
49%
| | |
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Handicap-accessible van
|
255
|
45%
| | |
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Modified bedroom
|
243
|
43%
| | |
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Modified kitchen
|
142
|
25%
| | |
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Installed elevator
|
79
|
14%
| | |
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Other
|
68
|
12%
| | |
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| | |
Mean
|
SD
|
Min
|
Max
|
Mean
|
SD
|
Min
|
Max
| | |
| |
Hours Missed from Work
|
4.6
|
8.7
|
0
|
65
|
3.4
|
7.6
|
0
|
48
|
0.04
|
0.01
|
| |
Occupational Complexity
|
3.2
|
1.3
|
1
|
5
|
3.6
|
1.2
|
1
|
5
|
< 0.0005
|
0.03
|
| |
Impact on Siblings
|
34.8
|
12.4
|
9
|
62
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Had to help with DMD caregiving
|
5.1
|
1.7
|
1
|
7
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Had to give up time with friends
|
4.2
|
1.9
|
1
|
7
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Had to give up sports or other extracurricular activities
|
3.9
|
2.1
|
1
|
7
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Difficult to arrange their activities (e g , transportation)
|
3.9
|
1.7
|
1
|
7
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Had to give up summer camp or travel
|
3.9
|
2.1
|
1
|
7
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Didn't present them with opportunities because didn't want patient to suffer
|
3.4
|
2.0
|
1
|
7
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Had to select a college close to home
|
3.2
|
2.1
|
1
|
7
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Had to give up going to college
|
2.8
|
2.0
|
1
|
7
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
| |
Plenty of money available for their activities or schooling
|
4.1
|
1.9
|
1
|
7
|
NA
|
NA
|
NA
|
NA
|
NA
|
NA
|
