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Journal of Patient-Reported Outcomes

Table 3 Spontaneous vs probed symptom expressions during the CE portion of the interviews

From: Development and adaptation of patient-reported outcome measures for patients who experience itch associated with primary biliary cholangitis

Symptom Reported, n (%)

Participants, N = 20

Spontaneous

Probed

Not Affected

Not Reported

Itching-related signs and symptoms

 Itching on the legs

15 (75)

–

–

5 (25)

 Itching on the arms

11 (55)

2 (10)

–

7 (35)

 Itching on the back

9 (45)

1 (5)

–

10 (50)

 Itching on the sides

9 (45)

1 (5)

–

10 (50)

 Itching on the abdomen

7 (35)

2 (10)

–

11 (55)

 Itching on the head

6 (30)

–

–

14 (70)

 Itching on the feet

3 (15)

–

–

17 (85)

 Itching on the hands

3 (15)

–

–

17 (85)

 Itching on the face

2 (10)

1 (5)

–

17 (85)

 Itching on the chest

1 (5)

–

–

19 (95)

 Itching on the groin

1 (5)

–

–

19 (95)

 Hives

1 (5)

–

–

19 (95)

 Rash

1 (5)

–

–

19 (95)

Energy-related signs and symptoms

    

 Fatigue

15 (75)

1 (5)

2 (10)

2 (10)

 Tiredness

6 (30)

–

–

14 (70)

 Lack of energy

3 (15)

–

–

17 (85)

 Exhausted

2 (10)

–

–

18 (90)

 Weakness

2 (10)

10 (50)

8 (40)

–

Gastrointestinal signs and symptoms

 Nausea

6 (30)

–

–

14 (70)

 Diarrhea

4 (20)

8 (40)

8 (40)

–

 Othera

3 (15)

1 (5)

–

16 (80)

 Abdominal bloating

2 (10)

10 (50)

6 (30)

2 (10)

 Changes in appetite

–

5 (25)

14 (70)

1 (5)

 Greasy diarrhea

1 (5)

7 (35)

11 (55)

1 (5)

 Urgency with bowel movements

–

12 (60)

7 (35)

1 (5)

Cognitive signs and symptoms

 Difficulty concentrating

3 (15)

11 (55)

6 (30)

–

 Difficulty remembering things

2 (10)

12 (60)

6 (30)

–

Pain and discomfort

 Bone pain/aches

5 (25)

2 (10)

–

13 (65)

 Muscle pain/aches

4 (20)

–

–

16 (80)

 Abdominal pain

3 (15)

9 (45)

7 (35)

1 (5)

 Discomfort in right side

3 (15)

11 (55)

5 (25)

1 (5)

 General pain

–

4 (20)

4 (20)

12 (60)

 Joint pain/aches

3 (15)

2 (10)

–

15 (75)

 Otherb

1 (5)

1 (5)

–

18 (90)

Additional signs and symptoms

 Dry eyes

6 (30)

8 (40)

6 (30)

–

 Difficulty staying asleep

5 (25)

11 (55)

4 (20)

–

 Dry mouth

4 (20)

9 (45)

7 (35)

–

 Hair loss

4 (20)

–

–

16 (80)

 Otherc

4 (20)

–

–

16 (80)

 Difficulty falling asleep

2 (10)

8 (40)

9 (45)

1 (5)

 Weak/brittle bones

2 (10)

1 (5)

17 (85)

–

 Darkening of the skin

1 (5)

7 (35)

12 (60)

–

 Fatty deposits on skin

1 (5)

5 (25)

14 (70)

–

 Gall stones

–

3 (15)

3 (15)

14 (70)

 Jaundice

1 (5)

1 (5)

18 (90)

–

 Kidney stones

–

5 (25)

9 (45)

6 (30)

 Swelling

–

10 (50)

10 (50)

–

  1. CE, concept elicitation
  2. aAcid reflux, constipation, fewer stools, don’t process vitamins/minerals properly
  3. bHeadache, migraine
  4. cWeight gain, weight loss, restless legs, sweating, skin flushed, heavy menstruation
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