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Table 2 Concept saturation: identification of novel CF impact concepts by transcript group

From: The Cystic Fibrosis Impact Questionnaire: qualitative development and cognitive evaluation of a new patient-reported outcome instrument to assess the life impacts of cystic fibrosis

Transcript group (42 total interview transcripts, organized chronologically)

Concepts first coded in group, n (%)

New impact concepts identified by transcript groupa

Group 1 (n = 7 transcripts)

39 (66.1)

Amount of Time for Treatment, Needing Additional Treatments, Increased Doctor’s Visits, Worry About Increased Hospitalization, Missed Opportunities due to Treatment, Resentment over Treatment, Difficulty Climbing Stairs, Difficulty Running, Limitations to Exercise/Sports, Limitations to Personal Care, Difficulty Talking, Limitations to Physical Activities in General, Feeling Weak/Lack Physical Strength, Anger, Anxiety, Distress, Embarrassment/ Self-Conscious, Fear, Frustration, Feeling Overwhelmed, Sadness, Stress, Worry, Poor Emotional Health in General, Lack of Awareness from Others, Lifestyle/Leisure Restrictions, Limited Play Opportunities, Social Isolation, Lower Productivity, School Absences, Unable to Work, Limited Goals, Uncomfortable Starting New Activities, Limited Ability to Plan, Feels Different from Others, Cost of Treatment/Care, Difficulty Falling Asleep, Difficulty Staying Asleep, Reduced Sleep Quality

Group 2 (n = 7 transcripts)

18 (30.5)

Difficulty Walking, Need to Rest More, Limitations to Housework/Chores, Guilt, Irritability/Moodiness, Symptoms of Depression, Vulnerability, Altered Relationships with Friends, Missed Social Activities, Work Absences, Poor Future Outlook, Feels Stigmatized, Fighting for Normalcy, Lack of Control, Overall QoL, Altered Relationships with Family, Caregiver Burden, Impact on Family Unit

Group 3 (n = 7 transcripts)

1 (1.7)

Cost of Inability to Work

Group 4 (n = 7 transcripts)

0 (0.0)


Group 5 (n = 7 transcripts)

1 (1.7)

Dating Difficulties

Group 6 (n = 7 transcripts)

0 (0.0)


  1. CF cystic fibrosis; QoL quality of life
  2. aFirst appearance of each concept. Saturation is confirmed when no new concepts arise after the earlier set of interviews