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Table 10 Meaningful change of the Hemo-TEM

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

 

Hemo-TEM Mean (SD)

Injection difficulties

Physical impact

Treatment bother

Interference

Emotional impact

Total score

PGIC: Compared to the hemophilia treatment you were taking BEFORE you started this study, would you say your current experience with taking your treatment is

A Little/Somewhat (n = 12)

– 10.4 (31.2)

– 0.4 (13.9)

– 8.9 (22.7)

– 6.3 (10.0)

– 4.5 (16.5)

– 6.1 (13.3)

A Good Deal (n = 9)

– 13.0 (24.0)

– 8.8 (17.4)

– 12.3 (13.7)

– 4.2 (17.1)

– 8.8 (10.9)

– 9.4 (10.6)

A Great Deal (n = 19)

– 13.6 (17.6)

– 8.8 (12.2)

– 10.3 (11.8)

– 9.5 (12.4)

– 7.0 (7.6)

– 9.9 (7.8)

A Very Great Deal (n = 15)

– 27.8 (37.2)

– 10.0 (17.9)

– 17.9 (21.4)

– 21.3 (20.2)

– 13.9 (18.3)

– 18.2 (19.8)

Total (n = 55)

– 16.7 (28.2)

– 7.3 (15.2)

– 12.4 (17.6)

– 11.1 (16.2)

– 8.6 (13.9)

– 11.2 (14.0)

PGIC: Compared to when you first started giving yourself injections as part of this study, would you say your experience with giving yourself injections is

A Little Worse (n = 1)

8.3 (–)

12.5 (–)

– 3.6 (–)

0.0 (–)

– 4.2 (–)

2.6 (–)

A Little/Somewhat (n = 11)

– 9.1 (28.2)

– 6.1 (10.6)

– 14.3 (21.4)

– 8.5 (14.3)

– 7.2 (17.4)

– 11.6 (12.3)

A Good Deal (n = 11)

– 12.9 (21.5)

– 7.6 (15.8)

– 15.3 (12.9)

– 6.3 (15.6)

– 7.6 (9.8)

– 9.9 (9.6)

A Great Deal (n = 15)

– 15.0 (32.0)

– 8.6 (12.1)

– 13.1 (20.1)

– 13.8 (16.9)

– 8.9 (9.2)

– 11.9 (14.5)

A Very Great Deal (n = 10)

– 21.7 (31.5)

– 10.8 (20.8)

– 14.3 (16.1)

– 19.4 (21.3)

– 14.6 (22.0)

– 16.1 (20.2)

Total (n = 48)

– 17.0 (28.7)

– 7.8 (14.7)

– 13.9 (17.5)

– 11.7 (17.1)

– 9.3 (14.5)

– 11.9 (14.2)