Table 5.
Analysis of distribution responses to the questionnaire comparing the 2016 sample with the 2022 sample.
| 2016 (N; %) | 2022 (N; %) | x2 p Value | ||
|---|---|---|---|---|
| Question 1 | ||||
| Speaking of motor skills, please indicate if in the last year you: | Remained stable | 23; 16.5% | 34; 43.6% | (x2 (2, N = 217) = 66.88, p < 0.001 **) |
| Deteriorated | 98; 70.5% | 10; 12.8% | ||
| Improved | 18; 12.9% | 34; 43.6% | ||
| Question 2 | ||||
| What do you expect in the next two years | Stable course | 30; 21.6% | 40; 51.3% | (x2 (2, N = 217) = 88.740, p < 0.001 **) |
| Deterioration | 96; 69.1% | 3; 3.8% | ||
| Improvement | 13; 9.4% | 35; 44.9% | ||
| Questions 3–6 | ||||
| Would you consider participating in a clinical trial if it offered the prospect of achieving at least 1, 2, or more than 2 activities on the HFMSE/RULM | ||||
| HFMSE | I would not participate | 4; 2.9% | 1; 1.3% | (x2 (4, N = 217) = 17.623, p < 0.001 **) |
| Acquisition from score 0 | At least 1 activity | 93; 66.9% | 46; 59.0% | |
| Two activities | 112; 80.6% | 48; 61.6% | ||
| More than 2 activities | 129; 92.8% | 73; 93.7% | ||
| HFMSE | I would not participate | 8; 5.8% | 1; 1.3% | (x2 (4, N = 78,217 10.518, p = 0.039 **) |
| Improvements from score 1 | At least 1 activity | 83; 59.7% | 44; 56.4% | |
| Two activities | 104; 74.8% | 50; 64.10% | ||
| More than 2 activities | 119; 89.6% | 68; 87.2% | ||
| RULM | I would not participate | 3; 2.2% | 1; 1.3% | (x2 (4, N = 217) = 12.156, p = 0.016 **) |
| Acquisition from score 0 | At least 1 activity | 69; 49.6% | 36; 46.2% | |
| Two activities | 82; 59.00% | 40; 51.3% | ||
| More than 2 activities | 92; 66.2% | 58; 74.4% | ||
| RULM | I would not participate | 15; 10.8% | 1; 1.3% | (x2 (4, N = 217) = 30.160, p < 0.001 **) |
| Improvements from score 1 | At least 1 activity | 61; 43.9% | 46; 59.0% | |
| Two activities | 80; 57.6% | 49; 62.8% | ||
| More than 2 activities | 89; 64.1% | 68; 87.2% | ||
| Question 7 | ||||
| Would you agree to have your child participate in a potential clinical trial if, in the absence of side effects or with the possibility of minimal side effects, the prospect was to slow down or to improve or to stop deterioration of motor function: | Slow down | |||
| Yes | 99; 71.2% | 55; 70.5% | (x2 (2, N = 217) = 4.330, p = 0.115) | |
| No | 17; 12.2% | 16; 20.5% | ||
| Uncertain | 23; 16.5% | 7; 9.00% | ||
| Stop deterioration | ||||
| Yes | 121; 87.1% | 62; 79.5% | (x2 (2, N = 217) = 3.272, p = 0.195) | |
| No | 7; 5.0% | 9; 11.5% | ||
| Uncertain | 11; 7.9% | 7; 9.00% | ||
| Improvement | ||||
| Yes | 134; 96.4% | 75; 96.2% | (x2 (2; N = 217) = 0.552; p = 0.759) | |
| No | 2; 1.4% | 2; 2.6% | ||
| Uncertain | 3; 2.2% | 1; 1.3% | ||
** = significant difference.