Figure 1
Flow-chart patient inclusion. Number of patients included, and reasons for exclusion.
Table 1
Patient characteristics.
| CHARACTERISTICS | BASELINE | n | FOLLOW-UP 1 | n | FOLLOW-UP 2 | n | FOLLOW-UP 3 | n |
|---|---|---|---|---|---|---|---|---|
| Amount of females (n) | 31 (58.5%) | 53 | 21 (56.8%) | 36 | 20 (64.5%) | 31 | 6 (60.0%) | 10 |
| Age at diagnosis (y) | 64.0 ± 9.1 | 53 | 63.9 ± 9.3 | 36 | 64.4 ± 9.2 | 31 | 66.7 ± 8.4 | 10 |
| Age at onset (y) | 56.9 ± 11.3 | 52 | 56.9 ± 10.9 | 36 | 55.8 ± 11.7 | 30 | 59.8 ± 14.6 | 10 |
| Diagnostic delay (y) | 8.8 ± 7.2 | 52 | 7.8 ± 7.0 | 36 | 8.4 ± 6.7 | 30 | 10.2 ± 6.1 | 10 |
| Mean age (y)* | 67.5 ± 8.4 | 53 | 69.5 ± 8.5 | 36 | 71.3 ± 8.7 | 31 | 75.3 ± 5.0 | 10 |
| Disease duration (y)** | 2.6 ± 2.6 | 53 | 5.5 ± 3.7 | 36 | 7.0 ± 3.7 | 31 | 8.4 ± 4.6 | 10 |
[i] Values are given either given in absolute numbers (percentage of total) or in mean ±SD. Abbreviations: n= number of patients.
*= Average age at completion of questionnaires.
**= Average disease duration at completion of questionnaires.
Table 2
Daily functioning over time.
| OUTCOME MEASURE | BASELINE | n | FOLLOW-UP 1 | n | FOLLOW-UP 2 | n | FOLLOW-UP 3 | n |
|---|---|---|---|---|---|---|---|---|
| Satisfactory walking ability | 75% | 48 | 67.5% | 37 | 55.6% | 29 | 57.1% | 7 |
| Sport(ing) activities | 61.9% | 44 | 48.7% | 36 | 65.4% | 29 | 71.4% | 7 |
| Influenced by fatigue | 79.6% | 49 | 90.0% | 37 | 61.5% | 29 | 71.4% | 7 |
| Influenced by stress | 71.4% | 49 | 70.0% | 37 | 57.7% | 29 | 85.7% | 7 |
| Influenced by weather | 25% | 48 | 25.6% | 36 | 37.5% | 27 | 42.6% | 7 |
| OT progressive | 85.7% | 49 | 86.1% | 33 | 80% | 28 | 85.7% | 7 |
| VAS score symptoms | 6.4 (±2.4) | 52 | 6.7 (±2.2) | 37 | 6.3 (±2.1) | 31 | 6.5 (±1.7) | 10 |
| VAS score impact | 6.1 (±2.6) | 51 | 6.7 (±2.4) | 37 | 6.1 (±2.2) | 30 | 6.6 (±1.9) | 10 |
| iADL | 1.8 (±2.4) | 52 | 2.1 (±2.7) | 37 | 2.0 (±2.8) | 31 | 1.8 (±2.4) | 10 |
| ADL | 5.9 (±0.4) | 53 | 6.0 (±0.2) | 34 | 5.8 (±0.5) | 30 | 6.0 (±0) | 10 |
[i] Values are given either in percentages based on the number of patients included in the analysis or in mean ± SD.
Abbreviations: n = number of patients.
Figure 2
SF-36 scores over time. Baseline SF-36 scores were below age-related normal values. Upon follow-up, scores remained stable, with no to minimal differences over time, except for a significant difference between baseline and FU3 for ‘physical role limitation’.
Abbreviations; FU = follow-up, SF-36 = Short Form 36.
Figure 3
Anxiety and depression over time. HADS anxiety (A) and depression (B) scores showed no significant improvement upon follow-up.