Table 2.
Signs and symptoms reported during concept elicitation (N = 15)
| Symptoms and signs reported | Spontaneous | Probed | Total N | Percent experienced symptom, % |
|---|---|---|---|---|
| Fatigue* | 13 | 0 | 13 | 87 |
| Dark urine | 11 | 0 | 11 | 73 |
| Abdominal (stomach) pain* | 9 | 0 | 9 | 60 |
| Difficulties swallowing* | 4 | 3 | 7 | 47 |
| Sexual difficulties* | 2 | 4 | 6 | 40 |
| Back pain* | 5 | 1 | 6 | 40 |
| Cognitive difficulties* | 5 | 0 | 5 | 33 |
| Headache* | 4 | 1 | 5 | 33 |
| Muscle weakness* | 5 | 0 | 5 | 33 |
| Shortness of breath* | 5 | 0 | 5 | 33 |
| Bruising | 4 | 0 | 4 | 27 |
| Sleep problems* | 3 | 1 | 4 | 27 |
| Paleness | 3 | 0 | 3 | 20 |
| Leg pain* | 3 | 0 | 3 | 20 |
| Chest discomfort* | 2 | 0 | 2 | 13 |
| Dizziness | 2 | 0 | 2 | 13 |
| Fast heart rate | 2 | 0 | 2 | 13 |
| Muscle aches | 2 | 0 | 2 | 13 |
| Yellow eyes | 1 | 0 | 1 | 7 |
| Sore spleen | 1 | 0 | 1 | 7 |
| Sensitive nerves | 1 | 0 | 1 | 7 |
| Heartburn | 1 | 0 | 1 | 7 |
| Hoarse voice | 1 | 0 | 1 | 7 |
| Vision problems | 1 | 0 | 1 | 7 |
| Urinary spasms | 1 | 0 | 1 | 7 |
| Ascites | 1 | 0 | 1 | 7 |
| Nausea | 0 | 1 | 1 | 7 |
*Denotes an item listed in the Paroxysmal Nocturnal Hemoglobinuria-Symptom Questionnaire (PNH-SQ)