Acquired Hemophilia Network;non Hematologist Perspectives

Background:

Acquired hemophilia (AH) is an autoimmune disease caused by an autoantibody to factor VIII (FVIII). Morbidity and mortality are high due to the age of the patients, underlying diseases, the toxic effects of immunosuppression, bleeding and is in part attributable to sequential delays in diagnosis and appropriate treatment.

Objective:

AH usually presents to clinicians without prior experience of the disease, therefore diagnosis is frequently delayed and bleeds under treated. Therefore improving the awareness among health care professionals to whom AH patients are likely to present is our main objective. Also, we believe that, optimal management of AH requires active participation of non-hematologist physicians, pharmacists and laboratory staff with hematologists.

Method:

For this objective, in May 2013, we carried out a survey among non-hematologist health care professionals including clinicians, clinical pharmacists and laboratory staff in 10 tertiary medical care Arabian Gulf centres to assess the degree of awareness regarding AH diagnosis and management and to address the difficulties they could face during management of such cases. To our surprise very informative data was collected. In December 2013, the second stage of our work we have established a network of health care workers among all gulf countries to continue our mission. This network has been named Acquired Hemophilia Network (AHN). Board members were designated representing 6 gulf countries including haematologists, pathologists and other healthcare specialists involved in the treatment and management of patients with acquired haemophilia. A case report form (CRF) was prepared and posted on AHN website to collect and document the cases of acquired hemophilia.

Results of survey

Total responders of our survey were 1104 ,953 of them were physicians, 57 laboratory staff physicians and 94 pharmacists. out of all physicians responded, 42% were not aware about AH, 45% would not consider mixing test for isolated prolonged aPTT and 47% of them would start bypassing agents in bleeding AH, but only 26% would use inhibitor eradication immediately upon confirmation. Almost half of the clinicians showed the haematologist‘s response in more than 24 hrs. The majority of clinicians, lab and pharmacists agreed that the lack of awareness about the disorder and its complications is the most important obstacle in achieving the optimal management of AH. Despite shortage of haematologists in the Arab Gulf countries, 46 of them don’t believe that non-hematologists should be empowered to start bypassing agents and inhibitor eradications in such a fatal disorders even after increasing awareness among them.

Expected outcomes of AHN

We expect Increasing awareness among non-hematology physicians for AH knowledge, Gathering information on past and present cases of Acquired Hemophilia for case series publication and Drawing expert-opinion and guidelines for recognition, diagnosis and management of acquired hemophilia & publish Gulf AH diagnosis and management consensus.