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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)