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Table 2 Patient demographic and clinical characteristics for targeted recruitment and enrolled cohort

From: Development of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT®) questionnaire: a new patient-reported outcome instrument for PAH

  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
  1. 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