Uptake of MyaBDR in Australia

Abstract

Background: Care for people with Haemophilia has improved much over the last two decades for those receiving early regular prophylaxis with clotting factor concentrates. One of the biggest challenges to formally assess the real benefit of prophylaxis is the need to monitor treatment adherence and outcome. MyABDR is a secure app for smartphones, linked to the web-based Australian Bleeding Disorder Registry (ABDR), for patients with bleeding disorders to self-record their home treatments and bleeds. Aims: To review uptake of MyABDR among Haemophilia A (HA) patients in Australia. Methods: MyABDR data was derived from the ABDR on patients from whom consent had been obtained. Data was obtained on diagnosis, severity, treatment regimen and interactions (treatments and bleeds) of patients registered to self-record on MyABDR. Prescribed treatment regimen was compared against the treatments recorded in MyABDR to understand adherence to prophylaxis and adherence to logging in the MyABDR app. Results: There are 2214 HA patients in the ABDR. 31.3% (694/2214) of HA patients in Australia are registered on MyABDR, which include 71.6% (499/696) severe and 12.6% (192/1518) non severe HA patients. 455 of the 499 severe HA patients registered on MyABDR were prescribed routine prophylaxis. Almost 90% (407/455) of MyABDR users commenced routinely recording their prophylaxis treatments with the paediatric group more adherent compared to the adult group. Within 6 months of commencing prophylaxis, time lag of 2 weeks or more in recording prophylaxis treatments in the MyABDR app was observed in 17% of users and adherence to logging in the MyABDR app dropped by 9%. There were 50.8% (207/407) of MyABDR users recording their prophylaxis treatments and reported at least one bleed. Conclusions: MyABDR is a valuable tool to determine relationship between treatment, outcome and patient compliance.L6335412122020-12-07 <br />