Table 1 Participant demographic and clinical characteristics
Characteristic | Patient 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 (%) | |||
6–8 | 6 (14.3) | N/A | 0 |
9–11 | 6 (14.3) | N/A | 1 (5.6) |
12–17 | 10 (23.8) | N/A | 6 (33.3) |
18–24 | 8 (19.0) | N/A | 6 (33.3) |
≥ 25 or older | 12 (28. 6) | N/A | 5 (27.8) |
Sex, n (%) | |||
Male | 18 (42.9) | 5 (22.7) | 11 (61.1) |
Female | 24 (57.1) | 17 (77.3) | 7 (38.9) |
Hispanic, Latino, or Spanish origin, n (%) | |||
Not Hispanic or Latino | 38 (90.5) | 20 (90.9) | 18 (100.0) |
Hispanic or Latino | 4 (9.5) | 2 (9.1) | 0 |
Race, n (%) | |||
Black or African American | 2 (4.8) | 1 (4.5) | 0 |
Native Hawaiian or other Pacific Islander | 1 (2.4) | 0 | 0 |
White | 37 (88.1) | 21 (95.5) | 16 (88.9) |
Other | 2 (4.8) | 0 | 2 (11.1) |
Highest education level completed, n (%) | |||
Less than high school | 18 (42.9) | 0 | 3 (16.7) |
High school | 9 (21.4) | 3 (13.6) | 8 (44.4) |
College | 4 (9.5) | 6 (27.3) | 4 (22.2) |
Bachelor’s degree | 6 (14.3) | 13 (59.1) | 2 (11.1) |
Graduate or professional school | 5 (11.9) | 0 | 1 (5.6) |
Employment status, n (%) | |||
Employed full-time for wages | 7 (35.0) | N/A | 1 (5.6) |
Employed part-time for wages | 5 (25.0) | N/A | 6 (33.3) |
Out of work for < 1 year | 0 | N/A | 1 (5.6) |
Out of work for > 1 year | 1 (5.0) | N/A | 2 (11.1) |
Homemaker | 1 (5.0) | N/A | 0 |
Student | 3 (15.0) | N/A | 1 (5.6) |
Retired | 1 (5.0) | N/A | 0 |
Unable to work | 2 (10.0) | N/A | 0 |
Not askeda | 22 | 7 | |
Patients’ self-rated overall health (compared with their peers), n (%) | |||
Poor | 2 (6.7) | N/A | 1 (5.6) |
Fair | 8 (26.7) | N/A | 3 (16.7) |
Good | 9 (30.0) | N/A | 9 (50.0) |
Very good | 9 (30.0) | N/A | 2 (11.1) |
Excellent | 2 (6.7) | N/A | 2 (11.1) |
Not askedb | 12 | 1 | |
Patients’ self-rated severity of CF symptoms, n (%) | |||
No symptoms | 0 | N/A | 1 (5.6) |
Mild | 10 (33.3) | N/A | 5 (27.8) |
Moderate | 15 (50.0) | N/A | 11 (61.1) |
Severe | 4 (13.3) | N/A | 0 |
Very severe | 1 (3.3) | N/A | 0 |
Not askedb | 12 | 1 | |
CF-related hospitalizations in the past year, mean (median; range) | 0.9 (0; 0–6) | N/A | 0.72 (0; 0–2) |
Duration of stay of most recent CF-related hospitalization, days (median; range) | 10.4 (11.0; 2–19) | N/A | 6.2 (4.0; 2–18) |
Mean most recent ppFEV1 value | 80.8 (85.0; 22–127) | N/A | 64.6 (61.5; 8–115) |
Comorbid conditions reported in ≥5% of participants, n (%) | |||
Bronchitis | 2 (4.8) | N/A | 3 (16.7) |
Asthma | 8 (19.0) | N/A | 7 (38.9) |
Recurring infections | 13 (31.0) | N/A | 1 (5.6) |
CF-related diabetes | 4 (9.5) | N/A | 4 (22.2) |
Pancreatic insufficiency | 30 (71.4) | N/A | 17 (94.4) |
Sinus disease | 13 (31.0) | N/A | 9 (50.0) |
GERD | 5 (11.9) | N/A | 5 (27.8) |
Malabsorption | 11 (26.2) | N/A | 9 (50.0) |
Depression | 2 (4.8) | N/A | 3 (16.7) |
Anxiety | 3 (7.1) | N/A | 1 (5.6) |
Patient is receiving CFTR modulator therapy, n (%) | |||
Yes | 17 (40.5) | N/A | 6 (33.3) |
No | 25 (59.5) | N/A | 12 (66.6) |