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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