What hemophilia patients expect from the new extended half-life (EHL) products and their willingness to switch - Results from the DACH region
S. von Mackensen1, W. Kalnins1, L. Hostettler2, J. Krucker2, M. Albisetti3, J. Weiss4, I. Pabinger4, J. Oldenburg5 (1Hamburg, Germany, 2Altstätten, Switzerland, 3Zurich, Switzerland, 4Vienna, Austria, 5Bonn, Germany)
Bleeding disorders, coagulation and fibrinolytic factors
Time: 17:15 - 18:15
Objective: Since half-life extended (EHL) products have been recently launched in Europe the National Member Organisations (NMO) of persons with haemophilia (PWH) from the DACH Region (D=Germany, A=Austria, CH=Switzerland) were interested to better understand PWH’s expectations and concerns towards these new EHL products in order to adapt haemophilia treatment to real patients’ needs.
Methods: A systematic postal survey was sent out to 2,644 PWH with haemophilia A or B in Germany (2015), Switzerland (2016) and Austria (2016).
Results: In total 1,007 questionnaires were sent back (38.1%), from whom 743 were adult haemophilia patients and 262 parents of haemophilic children participated, 2 could not be classified. The majority of patients had haemophilia A (84.5%), were severely affected (73.7%), received prophylaxis (57%), mostly three times a week (47.4%) and used recombinant products (60.2%). 14.9% had a history of an inhibitor (past, actual). One quarter did not know the correct half-life of their actual FC [HA/FVIII: 26%, HB/FIX: 31.1%]. Only 4% were unsatisfied with their actual FC, mainly with short half-life of FC and difficult manageability. They expected from the new products to provide less frequent injections, better efficacy and safety/no side effects. 59.5% would be willing to switch to new products if they have a prolonged half-life (87.1%) and the same safety of the actual FC (62.8%). Reasons for not willing to switch were fear of inhibitor development (71.4%) and fear of uncertain safety (60.9%). They wish more information about half-life (84.4%), possible side-effects (81.3%) and efficacy (77%) and would consider changing product if the prolongation of the half-life is at least double as high as the actual FC (40.5%). The majority wanted to receive information about new products from their haemophilia treater (76.3%) and the newsletter of their NMO (74.3%). Significant difference across countries were found regarding treatment regimen (p<.0001), used product category (p<.0001) and willingness to switch to new EHL products (p<.0001).
Conclusion: In this representative survey it could be shown that although PWH were generally satisfied with their actual FC the majority would be willing to switch from their actual FC to the new up-coming EHL products assuming the half-life is prolonged and has the same safety of the actual FC.