Introduction: Early treatment for acute bleeds in patients with haemophilia and inhibitors is feasible when patients are managed in haemophilia treatment centres (HTCs). Patients may need to attend non-HTCs for out-of-hours emergency care, especially if HTCs are not local and/or transport is difficult.
Aim: We evaluated the barriers to the fast treatment of bleeds in patients with haemophilia and inhibitors presenting at non-HTCs.
Methods: Healthcare professionals (HCPs) from non-HTCs in the United States (n = 218) and Germany (n = 98) were selected from validated online panels and invited to participate in a survey (October-November 2017).
Results: A mean of 6 (US) and 5 (German) patients with haemophilia and inhibitors were managed for bleeds by these HCPs over 12 months; patient characteristics were similar in both countries. The main HCPs involved in treating bleeds were emergency room specialists (94%) and haematologists (91%) (US); haematologists (79%) and anaesthesiologists (59%) (Germany). Only 26% (US) and 28% (Germany) of HCPs had access to treatment guidelines for these patients; access to bypassing agents was similarly limited: 44% (US) and 38% (Germany) of HCPs reported their institution did not stock these agents. In both countries, key reasons for delaying treatment were lack of bypassing agent availability, HCP experience/education of bleed disorders and internal process time.
Conclusion: Barriers to fast treatment of bleeds in patients with haemophilia and inhibitors were identified in non-HTCs in the United States and Germany. These could be reduced by improving the availability of treatment guidelines, bypassing agents and HCP education/training.
Keywords: bypassing agent; delay; education; haemophilia; non-haemophilia treatment centre; treatment.
© 2020 John Wiley & Sons Ltd.