Table 3. Descriptive statistics of outcomes measured
Construct | Measure | DMD caregiver | Comparison caregiver | P from T-test | Variance explained If p < .05 | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
Generic QOL | Mean | SD | Min | Max | Mean | SD | Min | Max | |||
| Â | PROMIS-10, Physical | 50.3 | 10.2 | 20 | 68 | 48.3 | 8.0 | 27 | 68 | < 0.0005 | 0.01 |
| Â | PROMIS-10, Mental | 49.0 | 10.1 | 21 | 68 | 50.3 | 8.0 | 25 | 68 | 0.02 | 0.01 |
| Â | NeuroQOL Positive Affect and Well-Being | 53.4 | 6.3 | 30 | 68 | 55.1 | 6.8 | 26 | 68 | < 0.0005 | 0.02 |
| Â | Ryff Environmental Mastery | 30.1 | 6.6 | 13 | 42 | 30.9 | 6.8 | 11 | 42 | 0.045 | 0.003 |
| Â | Resilience | 0.0 | 1.0 | -6 | 5 | 0.0 | 1.0 | -7 | 5 | 0.78 | Â |
| Â | Life Stress Questionnare | 35.8 | 13.5 | 18 | 78 | 35.9 | 14.2 | 18 | 90 | 0.85 | Â |
| Â | Difficulty Paying Bills | 2.2 | 1.1 | 1 | 5 | 1.9 | 1.1 | 1 | 5 | < 0.0005 | 0.02 |
Indirect Costs | Â | Mean | SD | Min | Max | Â | Â | Â | Â | Â | Â |
| Â | Count of accomodations | 3.1 | 2.2 | 0 | 8 | NA | NA | NA | NA | NA | NA |
| Â | Â | Frequency | % | Â | Â | Â | Â | Â | Â | Â | Â |
| Â | Modified home entrance | 379 | 67% | Â | Â | NA | NA | NA | NA | NA | NA |
| Â | Modified bathroom | 300 | 53% | Â | Â | NA | NA | NA | NA | NA | NA |
| Â | Modified inside home doorways | 277 | 49% | Â | Â | NA | NA | NA | NA | NA | NA |
| Â | Handicap-accessible van | 255 | 45% | Â | Â | NA | NA | NA | NA | NA | NA |
| Â | Modified bedroom | 243 | 43% | Â | Â | NA | NA | NA | NA | NA | NA |
| Â | Modified kitchen | 142 | 25% | Â | Â | NA | NA | NA | NA | NA | NA |
| Â | Installed elevator | 79 | 14% | Â | Â | NA | NA | NA | NA | NA | NA |
| Â | Other | 68 | 12% | Â | Â | NA | NA | NA | NA | NA | NA |
| Â | Â | Mean | SD | Min | Max | Mean | SD | Min | Max | Â | Â |
| Â | Hours Missed from Work | 4.6 | 8.7 | 0 | 65 | 3.4 | 7.6 | 0 | 48 | 0.04 | 0.01 |
| Â | Occupational Complexity | 3.2 | 1.3 | 1 | 5 | 3.6 | 1.2 | 1 | 5 | < 0.0005 | 0.03 |
| Â | Impact on Siblings | 34.8 | 12.4 | 9 | 62 | NA | NA | NA | NA | NA | NA |
| Â | Had to help with DMD caregiving | 5.1 | 1.7 | 1 | 7 | NA | NA | NA | NA | NA | NA |
| Â | Had to give up time with friends | 4.2 | 1.9 | 1 | 7 | NA | NA | NA | NA | NA | NA |
| Â | Had to give up sports or other extracurricular activities | 3.9 | 2.1 | 1 | 7 | NA | NA | NA | NA | NA | NA |
| Â | Difficult to arrange their activities (e g , transportation) | 3.9 | 1.7 | 1 | 7 | NA | NA | NA | NA | NA | NA |
| Â | Had to give up summer camp or travel | 3.9 | 2.1 | 1 | 7 | NA | NA | NA | NA | NA | NA |
| Â | 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 |
| Â | Had to select a college close to home | 3.2 | 2.1 | 1 | 7 | NA | NA | NA | NA | NA | NA |
| Â | Had to give up going to college | 2.8 | 2.0 | 1 | 7 | NA | NA | NA | NA | NA | NA |
| Â | Plenty of money available for their activities or schooling | 4.1 | 1.9 | 1 | 7 | NA | NA | NA | NA | NA | NA |