Subscales & Items | Child self-report | Parent proxy-report | ||||
---|---|---|---|---|---|---|
AN | C | FR | AN | C | FR | |
About My/My Child’s Neuromuscular Disease (AN) | ||||||
It is hard to breathe | 0.05 | 0.02 | 0.05 | 0.12 | 0.17 | 0.04 |
Get sick easily | 0.05 | 0.18 | 0.22 | 0.09 | 0.14 | 0.21 |
Get sores and/or rashes | 0.29 | 0.17 | 0.03 | 0.27 | 0.19 | 0.10 |
Legs hurt | 0.73 | 0.37 | 0.15 | 0.78 | 0.30 | 0.65 |
Feel tired | 0.80 | 0.14 | 0.21 | 0.77 | 0.12 | 0.51 |
Back feel stiff | 0.59 | 0.16 | 0.01 | 0.63 | 0.29 | 0.43 |
Wake up tired | 0.74 | 0.04 | 0.00 | 0.71 | 0.16 | 0.56 |
Hands are weak | 0.63 | 0.28 | 0.13 | 0.62 | 0.15 | 0.54 |
Hard to use the bathroom | 0.71 | 0.43 | 0.31 | 0.69 | 0.36 | 0.30 |
Hard to gain or lose weight when one wants to | 0.65 | 0.10 | 0.13 | 0.68 | 0.25 | 0.57 |
Hard to use my hands | 0.69 | 0.31 | 0.03 | 0.78 | 0.07 | 0.56 |
Hard to swallow food | 0.11 | 0.20 | 0.15 | 0.01 | 0.46 | 0.04 |
Takes a long time to bathe or shower | 0.70 | 0.00 | 0.07 | 0.71 | 0.25 | 0.56 |
Get hurt accidentally | 0.59 | 0.20 | 0.01 | 0.59 | 0.08 | 0.29 |
Take a long time to eat | 0.48 | 0.14 | 0.19 | 0.48 | 0.21 | 0.28 |
Hard to turn oneself during the night | 0.70 | 0.08 | 0.03 | 0.69 | 0.39 | 0.47 |
Hard to go places with one’s equipment | 0.66 | 0.22 | 0.36 | 0.61 | 0.46 | 0.37 |
Communication (C) | ||||||
Hard to tell the doctors and nurses how I feel | 0.28 | 0.81 | 0.19 | 0.26 | 0.83 | 0.18 |
Hard to ask the doctors and nurses questions | 0.09 | 0.87 | 0.28 | 0.35 | 0.89 | 0.12 |
Hard to explain the illness to other people | 0.13 | 0.87 | 0.16 | 0.21 | 0.87 | 0.02 |
About Our Family Resources (FR) | ||||||
Hard for my family to plan activities like vacations | 0.13 | 0.18 | 0.53 | 0.55 | 0.17 | 0.69 |
Hard for my family to get enough rest | 0.12 | 0.23 | 0.76 | 0.54 | 0.04 | 0.80 |
I think money is a problem in our family | 0.03 | 0.19 | 0.82 | 0.46 | 0.10 | 0.87 |
I think my family has a lot of problems | 0.01 | 0.17 | 0.84 | 0.64 | 0.06 | 0.79 |
Do not have the equipment one needs | 0.05 | 0.14 | 0.70 | 0.52 | 0.09 | 0.80 |