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Table 1 Concept elicitation and cognitive debriefing adult samples—summary

From: Understanding treatment burden in hemophilia: development and validation of the Hemophilia Treatment Experience Measure (Hemo-TEM)

Concept elicitation interview respondent sample: summary

Patient demographic characteristics

Prophylactic regimen (n = 19)

On demand regimen (n = 5)

Inhibitor regimen (n = 6)

Total (n = 30)

Age

 Mean

35.7

32.2

47.8

37.5

 Median

35

31

53

35.5

 (range)

(20–55)

(20–47)

(23–65)

(20–65)

Marital Status, n (%)

 Single

9 (47.4)

4 (80)

1 (16.7)

14 (46.7)

 Married

6 (31.6)

1 (20)

4 (66.7)

11 (36.7)

 Partnered

2 (10.5)

0 (0)

0 (0)

2 (6.7)

 Separated

0 (0)

0 (0)

1 (16.7)

1 (3.3)

 Divorced

2 (10.5)

0 (0)

0 (0)

2 (6.7)

Race/Ethnicity, n (%)

 Asian-American

1 (5.3)

1 (20)

0 (0)

2 (6.7)

 Black/African-American

5 (26.3)

1 (20)

0 (0)

6 (20)

 Latino/Hispanic

0 (0)

0 (0)

1 (16.7)

1 (3.3)

 Mixed Race

1 (5.3)

1 (20)

1 (16.7)

3 (10)

 White/Caucasian

11 (57.9)

2 (40)

4 (66.7)

17 (56.7)

 Decline to answer

1 (5.3)

0 (0)

0 (0)

1 (3.3)

Work Status, n (%)

 Work part-time

6 (31.6)

0 (0)

1 (16.7)

7 (23.3)

 Work full time

9 (47.4)

2 (40)

3 (50)

14 (46.7)

 Student

1 (5.3)

1 (20)

0 (0)

2 (6.7)

 Not working (disabled)

2 (10.5)

2 (40)

2 (33.3)

6 (20)

 Not working

1 (5.3)

0 (0)

0 (0)

1 (3.3)

Education, n (%)

 High school

2 (10.5)

1 (20)

0 (0)

3 (10)

 Vocational/technical

1 (5.3)

0 (0)

2 (33.3)

3 (10)

 Some college

7 (36.8)

3 (60)

1 (16.7)

11 (36.7)

 College degree

7 (36.8)

0 (0)

3 (50)

10 (33.3)

 Graduate/professional

2 (10.5)

1 (20)

0 (0)

3 (10)

Patient general health, disease and treatment characteristics

Prophylactic regimen (n = 19)

On demand regimen (n = 5)

Inhibitor regimen (n = 6)

Total (n = 30)

Hemophilia Type, n (%)

 Type A

15 (78.9)

5 (100)

6 (100)

26 (86.7)

 Type B

4 (21.1)

0 (0)

0 (0)

4 (13.3)

Hemophilia Severity Level, n (%)

    

 Severe

18 (94.7)

4 (80)

6 (100)

28 (93.3)

 Moderate

1 (5.3)

1 (20)

0 (0)

2 (6.7)

Number of comorbidities

    

 Mean

3.3

1.8

2.5

2.9

 Median

3

2

2.5

2.9

 (range)

(1–7)

(0–4)

(0–4)

(0–7)

Lifetime Inhibitor Status, n (%)

    

 Current inhibitor

  

6 (100)

6 (20)

 … inhibitor status high

4 (66.7)

4 (13.3)

 … inhibitor status low

2 (33.3)

2 (6.7)

 Past inhibitor

8 (42.1)

0 (0)

0 (0)

8 (26.7)

 Never had inhibitor

11 (57.9)

5 (100)

0 (0)

16 (53.3)

Number of years with current inhibitor

 Mean

0 (0)

0 (0)

36.2a

 

 Median

0 (0)

0 (0)

37a

 

 (range)

0 (0)

0 (0)

(“several years”– 47)

 

Current Regimen, n (%)

    

 Current Inhibitor regimen

6 (100)

6 (20)

 On Demand regimen (no current inhibitor)

5 (100)

-

5 (16.7)

 Prophylactic, regimen (no current inhibitor)

19 (100)

-

19 (63.3)

Cognitive debriefing respondent sample: summary

Patient demographic characteristics

Prophylactic regimen (n = 10)

On demand regimen (n = 2)

Inhibitor regimen (n = 2)

Total (n = 14)

Age

    

 Mean

36.8

54.5

34.5

36.8

 Median

29

54.5

34.5

29

 (range)

(20–59)

(45–64)

(26–43)

(20–64)

Marital Status, n (%)

    

 Single

9 (90)

0 (0)

2 (100)

11 (78.6)

 Married

1 (10)

2 (100)

0 (0)

3 (21.4)

Race/Ethnicity, n (%)

    

 Asian-American

2 (20)

0 (0)

0 (0)

2 (14.3)

 Black/African-American

2 (20)

0 (0)

0 (0)

2 (14.3)

 Latino/Hispanic

2 (20)

0 (0)

1 (50)

3 (21.4)

 White/Caucasian

3 (30)

2 (100)

1 (50)

6 (42.9)

 Decline to answer

1 (10)

0 (0)

0 (0)

1 (7.1)

Work Status, n (%)

    

 Work part-time

1 (10)

0 (0)

1 (50)

2 (14.3)

 Work full time

4 (40)

1 (50)

1 (50)

6 (42.9)

 Student

1 (10)

0 (0)

0 (0)

1 (7.1)

 Not working (disabled)

2 (20)

1 (50)

0 (0)

3 (21.4)

 Not working

2 (20)

0 (0)

0 (0)

2 (14.3)

Education, n (%)

    

 High school

3 (30)

0 (0)

0 (0)

3 (21.4)

 Some college

4 (40)

1 (50)

1 (50)

6 (42.9)

 College degree

2 (20)

1 (50)

0 (0)

3 (21.4)

 Graduate/professional

1 (10)

0 (0)

1 (50)

2 (14.3)

Cognitive debriefing respondent sample: summary

Patient general health, disease and treatment characteristics

Prophylactic regimen (n = 10)

On demand regimen (n = 2)

Inhibitor regimen (n = 2)

Total (n = 14)

Hemophilia Type, n (%)

    

 Type A

8 (80)

2 (100)

2 (100)

12 (85.7)

 Type B

2 (20)

0 (0)

0 (0)

2 (14.3)

Hemophilia Severity Level, n (%)

    

 Severe

8 (80)

1 (50)

2 (100)

11 (78.6)

 Moderate

2 (20)

1 (50)

0 (0)

3 (21.4)

Number of comorbidities

    

 Mean

2.5

4

1.5

2.6

 Median

2

4

1.5

2

 (range)

(0–6)

(3–5)

(1–2)

(0–6)

Lifetime Inhibitor Status, n (%)

    

 Current inhibitor

  

2 (100)

2 (14.3)

 … inhibitor status high

2 (100)

2 (14.3)

 Past inhibitor

2 (20)

0 (0)

0 (0)

2 (14.3)

 Never had inhibitor

8 (80)

2 (100)

0 (0)

10 (71.4)

Current Regimen, n (%)

    

 Current Inhibitor regimen

-

-

2 (100)

2 (14.3)

 On Demand regimen (no current inhibitor)

-

2 (100)

-

2 (14.3)

 Prophylactic, regimen (no current inhibitor)

10 (100)

-

-

10 (71.4)

  1. an = 5, due to missing data