Table 4.
mPRO and QoL scale results across the 6-month period with overall cohort averages and statistical significance
| Mean (Median) [min-max] |
M0 | M1 | M2 | M3 | M4 | M5 | M6 | Overall Cohort | Wilcoxon p-value | Hollander p-value | Reference range |
|---|---|---|---|---|---|---|---|---|---|---|---|
| Tremor impact |
0.0 (0.0) [0.00–0.00] |
0.4 (0.0) [0.00–1.00] |
0.8 (0.5) [0.00–2.00] |
1.0 (1.0) [0.00–2.00] |
0.7 (0.5) [0.00–2.00] |
0.9 (1.0) [0.00–2.00] |
1.3 (1.0) [0.00–2.00] |
0.7 (0.5) [0.00–2.00] |
0.05 | 0.9375 |
0–3 Higher score: more tremor |
| Disease Impact |
4.5 (5.0) [2.00–7.00] |
4.9 (4.5) [0.00–10.00] |
4.1 (4.0) [1.00–6.00] |
5.8 (6.5) [1.00–10.00] |
5.6 (5.0) [2.00–9.00] |
6.1 (5.0) [3.00–10.00] |
5.7 (5.5) [3.00–9.00] |
5.2 (5.0) [0.00–10.00] |
0.20 | 0 |
0–19 Higher score = higher impact |
| Impact on the family |
6 (6.0) [2.00–9.00] |
6.1 (6.0) [4.00–9.00] |
5.6 (6.0) [2.00–8.00] |
6.3 (6.0) [5.00–8.00] |
6.3 (6.0) [5.00–8.00] |
6.1 (6.0) [5.00–8.00] |
6.3 (6.5) [5.00–8.00] |
6.1 (6.0) [2.00–9.00] |
0.79 | 0 |
0–12 Higher score = higher impact |
| Wider impact |
1.3 (0.0) [0.00–7.00] |
1.3 (0.0) [0.00–7.00] |
2.6 (1.0) [0.00–7.00] |
1.2 (0.0) [0.00–6.00] |
1.6 (0.0) [0.00–7.00] |
0.9 (0.0) [0.00–5.00] |
1.8 (1.0) [0.00–7.00] |
1.5 (0.0) [0.00–7.00] |
1.0 | 0 |
0–14 Higher score = higher impact |
| Impact Composite Scale |
0.27 (0.28) [0.11–0.40] |
0.28 (0.31) [0.10–0.40] |
0.29 (0.27) [0.08–0.44] |
0.32 (0.34) [0.15–0.45] |
0.27 (0.25) [0.00–0.49] |
0.30 (0.29) [0.21–0.40] |
0.31 (0.31) [0.23–0.40] |
0.27 (0.29) [0.00–0.49] |
0.42 | 0 |
0–1 Higher score = higher impact |
| Perceived Stress |
17.9 (18.5) [11.00–26.00] |
NA |
19.6 (21.0) [7.00–25.00] |
NA |
16.3 (18.0) [9.00–24.00] |
NA |
20.0 (20) [12.00–29.00] |
18.4 (19.3) [7.00–29.00] |
0.04 | 0.8742 |
0–40 Higher score = higher stress |
| Global Self Worth |
17.0 (17.5) [12.00–24.00] |
NA |
16.0 (15.5) [13.00–22.00] |
NA |
17.8 (18.0) [14.00–22.00] |
NA |
18.1 (18.0) [14.00–24.00] |
17.2 (17.8) [12.00–24.00] |
0.59 | 0.5 |
0–24 Higher score = higher self-worth |
| Rosenberg Self Esteem |
15.0 (15.0) [11.00–17.00] |
NA |
15.3 (15.5) [11.00–19.00] |
NA |
14.4 (14.0) [13.00–16.00] |
NA |
15.4 (15.0) [13.00–19.00] |
15.0 (15.0) [11.00–19.00] |
0.68 | 0 |
0–30 Higher score = higher self esteem |
| CHU 9D |
0.87 (0.88) [0.67–0.96] |
NA |
0.84 (0.83) [0.66–1.00] |
NA |
0.83 (0.83) [0.68–0.92] |
NA |
0.83 (0.84) [0.72–0.95] |
0.84 (0.83) [0.66–1.00] |
0.36 | 0.438 |
0.33–1 Higher score = better health |
| PedsQL Multi-dimensional Fatigue |
49.5 (46.5) [31.94–73.61] |
46.5 (43.1) [27.78–75.00] |
46.7 (43.1) [38.89–66.67] |
49.7 (45.8) [34.72–73.61] |
46.6 (45.1) [29.17–75.00] |
50.2 (50.0) [31.94–83.33] |
61.1 (58.3) [50.00–75.00] |
49.6 (45.8) [27.78–83.33] |
0.73 | 0 |
0–100 Higher score = less fatigue |
CHU 9D Child Health Utility 9D, M month