Table 2.
Patient demographic and clinical characteristics for targeted recruitment and enrolled cohort
| Target | Phase 1: focus groups (n = 25) | Phase 2: cognitive interviews (n = 20) | Phase 3: cognitive/usability interviews (n = 10) | Total sample (n = 55) | |
|---|---|---|---|---|---|
| Age (years) | |||||
| <65 | Phase 1 & 2: No exact target aside from diversity; Phase 3: 50 % |
18 (72 %) | 13 (68 %) | 8 (80 %) | 40 (73 %) |
| ≥65 | Phase 1 & 2: No exact target aside from diversity; Phase 3: 50 % |
7 (18 %) | 6 (32 %) | 2 (20 %) | 15 (27 %) |
| Mean ± SD | 53.6 ± 15.5 | 54.3 ± 17.7 | 49.6 ± 13.1 | 53.1 ± 15.8 | |
| Range | 28–76 | 20–79 | 28–69 | 20–79 | |
| Gender (n, %) | |||||
| Female | 75 %–80 % | 23 (92 %) | 18 (90 %) | 10 (100 %) | 51 (93 %) |
| Male | 20 %–25 % | 2 (8 %) | 2 (10 %) | 0 (0 %) | 4 (7 %) |
| Ethnicity (n, %)a | |||||
| Caucasian | 70 %–75 % | 17 (68 %) | 12 (60 %) | 8 (80 %) | 37 (68 %) |
| African American | 7 %–10 % | 4 (16 %) | 4 (20 %) | 1 (10 %) | 9 (16 %) |
| Hispanic or Latino | 7 %–10 % | 1 (4 %) | 3 (15 %) | 2 (20 %) | 6 (11 %) |
| Asian | 3 %–5 % | 0 | 0 | 0 | 0 |
| American Indian/Alaskan Native | 3 (12 %) | 0 (0 %) | 0 (0 %) | 3 (5 %) | |
| Otherb | 0 (0 %) | 1 (5 %) | 0 (0 %) | 1 (2 %) | |
| Highest level of education (n, %) | No exact target aside from diverse educational background | ||||
| Elementary/primary school | 0 (0 %) | 0 (0 %) | 1 (10 %) | 1 (2 %) | |
| Secondary/high school | 8 (32 %) | 5 (25 %) | 1 (10 %) | 14 (25 %) | |
| Some college | 12 (48 %) | 7 (35 %) | 6 (60 %) | 25 (45 %) | |
| College degree | 2 (8 %) | 4 (20 %) | 1 (10 %) | 7 (13 %) | |
| Postgraduate degree | 3 (12 %) | 3 (15 %) | 1 (10 %) | 7 (13 %) | |
| Other | 0 (0 %) | 1 (5 %) | 0 (0 %) | 1 (2 %) | |
| Incident vs. prevalent patients | |||||
| Newly diagnosed (incident) | 10 %–15 % | 2 (8 %) | 5 (25 %) | 2 (20 %) | 9 (16 %) |
| Previously diagnosed (prevalent) | 85 %–90 % | 23 (92 %) | 15 (75 %) | 8 (80 %) | 46 (84 %) |
| Patient’s most recent FC | |||||
| FC I | 5 %–8 % | 2 (8 %) | 2 (10 %) | 0 (0 %) | 4 (7 %) |
| FC II | 35 %–40 % | 11 (44 %) | 8 (40 %) | 8 (80 %) | 27 (49 %) |
| FC III | 45 %–50 % | 11 (44 %) | 9 (45 %) | 2 (20 %) | 22 (40 %) |
| FC IV | 3 %–5 % | 1 (4 %) | 1 (5 %) | 0 (0 %) | 2 (4 %) |
| PAH etiology | |||||
| APAH | 50 %–55 % | 11 (56 %) | 9 (45 %) | 3 (30 %) | 23 (42 %) |
| IPAH | 45 %–50 % | 14 (44 %) | 10 (50 %) | 7 (70 %) | 31 (56 %) |
| FPAH | 3 %–5 % | 0 (0 %) | 1 (5 %) | 0 (0 %) | 1 (2 %) |
| Shortness of breath at its worst (numerical rating scale, 0–10), mean ± SD | N/A | ||||
| Walking on flat surface | 4.0 ± 2.2 | 4.0 ± 2.9 | 4.8 ± 3.1 | 4.1 ± 2.7 | |
| Climbing up 1 flight of stairs | 6.6 ± 2.5 | 5.3 ± 3.2c | 8.1 ± 2.0 | 6.4 ± 2.9c |
aNot mutually exclusive; bParticipant wrote “Jamaican” (n = 1); c1 participant did not answer this question (Phase 2 n = 19, Total n = 54); APAH PAH associated with other conditions, FC functional class, FPAH familial PAH, IPAH idiopathic PAH, N/A not applicable, PAH pulmonary arterial hypertension, SD standard deviation