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%) | - |