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Table 2 Signs and symptoms reported during concept elicitation (N = 15)

From: A novel patient-reported outcome instrument assessing the symptoms of paroxysmal nocturnal hemoglobinuria, the PNH-SQ

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
  1. *Denotes an item listed in the Paroxysmal Nocturnal Hemoglobinuria-Symptom Questionnaire (PNH-SQ)