EHC Newsletter December 2015

48
No side effect of current product 51 (54.3%) 39 (53.4%)
Satisfaction with current product 47 (50%) 28 (38.4%)
Lack of transparency of info of new
product
Immediate availability of current
product
34 (36.2%) 21 (28.8%)
27 (22.7%) 8 (11%)
Good manageability of current product 21 (22.3%) 10 (13.7%)
No advantage to change product 14 (14.9%) 5 (6.8%)
Other reason 4 (4.3%) 3 (4.1%)
Figure 5: Reasons for not being willing to switch to new EHL products (differentiated for adult patients and
parents; bold numbers indicate significant differences between parents and patients)
German PWH had almost no information about the new up-coming products, but wished to have more
information about half-life, possible side-effects and efficacy and would consider changing products if
the prolongation of the half-life is at least double as high as of their current factor concentrate (see
Erreur ! Source du renvoi introuvable.6).
45
40
35
Percentage
30
25
20
15
10
5
0
I would
not
switch
1.2x
longer
1.5x
longer
2x
longer
Patients
3x
longer
5x
longer
Parents
10x
longer
as long
as
possible
I don't
know
Figure 6 (above) shows the half-life prolongation time that would prompt switching to new EHL products
(differentiated for adult patients and parents). Most PWH want to be informed about new products by their
haemophilia treater (79 per cent), through leaflets or newsletter from DHG (77 per cent) and information letters
from their haemophilia treatment centre or the DHG (32 per cent). When asked how they want the therapy to be
administered most PWH said that they would like to have different package sizes, a better manageability and a
different way of administering their factor concentrate.
Conclusion & Outlook
German patients and parents of children with haemophilia reported to being generally
satisfied with their current factor concentrates. But they were unsatisfied with their
coagulation factor concentrates’ half-life, manageability and storage conditions.
The findings of this representative survey among German patients and parents of children with
haemophilia showed new insights into how PWH want to be informed about new products,