Table 3 Frequency of LOPD symptoms and associated symptom disturbance rating
| Symptom concepts descriptors for LOPD | Total mentions (N = 13) | Symptom disturbance, mean (SD) (0 = not disturbing at all; 10 = extremely disturbing) |
|---|---|---|
| Muscle and mobility | ||
|
Site-specific pain (not back) *Pain | 9 (69.2%) | 5.3 (2.5) |
| Muscle weakness in lower body (hips and/or legs) | 8 (61.5%) | 8.0 (2.1) |
| Change in body shape | 8 (61.5%) | 4.4 (3.1) |
| Back pain | 7 (53.8%) | 6.3 (2.4) |
| Muscle weakness in upper body (core and/or arms) | 6 (46.2%) | 6.4 (2.1) |
| Muscle weakness everywhere | 6 (46.2%) | 7.3 (1.8) |
| Muscle aches | 5 (38.5%) | 6.6 (3.1) |
| Stabbing, shooting, sharp pain | 1 (7.7%) | 1.0 (0.0) |
| Moderate to severe scoliosis | 1 (7.7%) | 5.0 (0.0) |
| Breathing and respiratory | ||
|
Shortness of breath *Breathing difficulties | 7 (53.8%) | 4.5 (2.5) |
|
Trouble breathing while lying down *Breathing difficulties while lying down | 7 (53.8%) | 5.4 (3.7) |
| Trouble breathing while sleeping | 6 (46.2%) | 3.8 (2.5) |
| Frequent respiratory infections | 2 (15.4%) | 4.5 (0.5) |
| Trachea secretion and drainage | 1 (7.7%) | 5.0 (0.0) |
| Other | ||
|
Fatigue *Tiredness/fatigue/need to rest | 12 (92.3%) | 7.3 (1.5) |
| Frequent urination/OAB | 2 (15.4%) | 6.5 (0.5) |
| Acid reflux | 1 (7.7%) | 2.0 (0.0) |
| Loose bowel | 1 (7.7%) | 8.0 (0.0) |
| Some fiber neuropathy | 1 (7.7%) | 7.0 (0.0) |
| Stiffness in back | 1 (7.7%) | 9.0 (0.0) |
|
Headaches *Headaches *Morning headaches | 1 (7.7%) | 4.0 (0.0 |
| Hives related to infusion | 1 (7.7%) | - |