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Table 5 Spontaneous vs probed impact 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
Emotional functioning
 Anxiety 7 (35) 2 (10) 3 (15) 8 (40)
 Embarrassment 5 (25) 1 (5) 3 (15) 11 (55)
 Depression 4 (20) 1 (5) 3 (15) 12 (60)
 Worry 3 (15) 5 (25) 3 (15) 9 (45)
 Anger 2 (10) 2 (10) 3 (15) 13 (65)
 Frustration 2 (10) 5 (25) 3 (15) 10 (50)
 Stress 2 (10) 4 (20) 3 (15) 11 (55)
 Guilt 1 (5) 3 (15) 3 (15) 13 (65)
 Othera 1 (5) 19 (95)
Changes in daily performance
 Work 13 (65) 2 (10) 3 (15) 2 (10)
 General functioning/daily routine 4 (20) 5 (25) 3 (15) 8 (40)
 Housework/chores 4 (20) 5 (25) 3 (15) 8 (40)
 Needs to pace self 3 (15) 11 (55) 6 (30)
 Takes longer than usual to recover 3 (15) 14 (70) 2 (10) 1 (5)
 Takes longer than usual to complete tasks 2 (10) 13 (65) 5 (25)
 Need to force self 1 (5) 12 (60) 7 (35)
 Otherb 1 (5) 3 (15) 16 (80)
Limitations to lifestyle and activities
 Changes to diet 12 (60) 3 (15) 4 (20) 1 (5)
 Changes to alcohol consumption 7 (35) 6 (30) 6 (30) 1 (5)
 Exercise/sports 5 (25) 5 (25) 6 (30) 4 (20)
 Travel 5 (25) 2 (10) 6 (30) 7 (35)
 Unable to plan things in advance 4 (20) 6 (30) 9 (45) 1 (5)
 Clothing restrictions 2 (10) 18 (90)
 Otherc 1 (5) 19 (95)
Limitations to social functioning
 Social activities limited 8 (40) 6 (30) 6 (30)
 Family relations affected 6 (30) 4 (20) 9 (45) 1 (5)
 Friends relations affected 5 (25) 2 (10) 8 (40) 5 (25)
 Relationships with partner affected 3 (15) 3 (15) 8 (40) 6 (30)
 Workplace relations affected 2 (10) 2 (10) 8 (40) 8 (40)
 Otherd 1 (5) 19 (95)
 Less interest in sex 5 (25) 14 (70) 1 (5)
 Sexual function issues 3 (15) 14 (70) 3 (15)
Sleep difficulties caused by itching or other symptoms
 Difficulty staying asleep 13 (65) 3 (15) 4 (20)
 Difficulty falling asleep 7 (35) 4 (20) 9 (45)
 Needs to take naps 3 (15) 7 (35) 10 (50)
 Reduced sleep quality 3 (15) 1 (5) 4 (20) 12 (60)
 Wakes up too early 3 (15) 2 (10) 4 (20) 11 (55)
 Goes to bed early 10 (50) 10 (50)
Additional impacts
 Scratching until skin is raw/infected 11 (55) 7 (35) 2 (10)
 Decreased quality of life 3 (15) 12 (60) 5 (25)
 Economic burden 2 (10) 6 (30) 11 (55) 1 (5)
 Treatment burden 2 (10) 1 (5) 17 (85)
  1. CE, concept elicitation
  2. aConcern about having children
  3. bSchool
  4. cGardening
  5. dSocial stigma