Skip to main content

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