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Table 1 Participant demographic and clinical characteristics

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

CharacteristicPatient concept elicitation participants (N = 42)Caregiver concept elicitation participants (N = 22)Cognitive interview participants (N = 18)
Age, years, mean (median; range)20.9 (17.4; 6.7–58.2)42.6 (41.5; 33.2–60.3)20.6 (19.1; 9.0–33.0)
Age quota group, years, n (%)
 6–86 (14.3)N/A0
 9–116 (14.3)N/A1 (5.6)
 12–1710 (23.8)N/A6 (33.3)
 18–248 (19.0)N/A6 (33.3)
  ≥ 25 or older12 (28. 6)N/A5 (27.8)
Sex, n (%)
 Male18 (42.9)5 (22.7)11 (61.1)
 Female24 (57.1)17 (77.3)7 (38.9)
Hispanic, Latino, or Spanish origin, n (%)
 Not Hispanic or Latino38 (90.5)20 (90.9)18 (100.0)
 Hispanic or Latino4 (9.5)2 (9.1)0
Race, n (%)
 Black or African American2 (4.8)1 (4.5)0
 Native Hawaiian or other Pacific Islander1 (2.4)00
 White37 (88.1)21 (95.5)16 (88.9)
 Other2 (4.8)02 (11.1)
Highest education level completed, n (%)
 Less than high school18 (42.9)03 (16.7)
 High school9 (21.4)3 (13.6)8 (44.4)
 College4 (9.5)6 (27.3)4 (22.2)
 Bachelor’s degree6 (14.3)13 (59.1)2 (11.1)
 Graduate or professional school5 (11.9)01 (5.6)
Employment status, n (%)
 Employed full-time for wages7 (35.0)N/A1 (5.6)
 Employed part-time for wages5 (25.0)N/A6 (33.3)
 Out of work for < 1 year0N/A1 (5.6)
 Out of work for > 1 year1 (5.0)N/A2 (11.1)
 Homemaker1 (5.0)N/A0
 Student3 (15.0)N/A1 (5.6)
 Retired1 (5.0)N/A0
 Unable to work2 (10.0)N/A0
 Not askeda22 7
Patients’ self-rated overall health (compared with their peers), n (%)
 Poor2 (6.7)N/A1 (5.6)
 Fair8 (26.7)N/A3 (16.7)
 Good9 (30.0)N/A9 (50.0)
 Very good9 (30.0)N/A2 (11.1)
 Excellent2 (6.7)N/A2 (11.1)
 Not askedb12 1
Patients’ self-rated severity of CF symptoms, n (%)
 No symptoms0N/A1 (5.6)
 Mild10 (33.3)N/A5 (27.8)
 Moderate15 (50.0)N/A11 (61.1)
 Severe4 (13.3)N/A0
 Very severe1 (3.3)N/A0
 Not askedb12 1
CF-related hospitalizations in the past year, mean (median; range)0.9 (0; 0–6)N/A0.72 (0; 0–2)
Duration of stay of most recent CF-related hospitalization, days (median; range)10.4 (11.0; 2–19)N/A6.2 (4.0; 2–18)
Mean most recent ppFEV1 value80.8 (85.0; 22–127)N/A64.6 (61.5; 8–115)
Comorbid conditions reported in ≥5% of participants, n (%)
 Bronchitis2 (4.8)N/A3 (16.7)
 Asthma8 (19.0)N/A7 (38.9)
 Recurring infections13 (31.0)N/A1 (5.6)
 CF-related diabetes4 (9.5)N/A4 (22.2)
 Pancreatic insufficiency30 (71.4)N/A17 (94.4)
 Sinus disease13 (31.0)N/A9 (50.0)
 GERD5 (11.9)N/A5 (27.8)
 Malabsorption11 (26.2)N/A9 (50.0)
 Depression2 (4.8)N/A3 (16.7)
 Anxiety3 (7.1)N/A1 (5.6)
Patient is receiving CFTR modulator therapy, n (%)
 Yes17 (40.5)N/A6 (33.3)
 No25 (59.5)N/A12 (66.6)
  1. CF cystic fibrosis; CFTR CF transmembrane conductance regulator; GERD gastroesophageal reflux disease; N/A not available (variable was not collected or not applicable to the respondent); ppFEV1 percent predicted forced expiratory volume in 1 s
  2. aItem asked only of adult patients aged ≥18 years (n = 20)
  3. bItem asked only of patients aged ≥12 years (n = 30)