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 |