Improving haemophilia diagnosis in developing countries: the Malian experience

Abstract Introduction Around 90% of all undiagnosed people with haemophilia (PWH) live in developing countries. In Mali, in sub-Saharan Africa, nearly 90% of potential PWH are not identified. We initiated a two-year study involving an integrated programme of training and awareness-raising with the aim of improving diagnosis and access to care for PWH, based on partnership with those who regularly interact with them. Methodology Our training programme focused on four regions of Mali and the district of Bamako, and included three types of health professionals from different districts and hospitals: medical doctor, nurse and laboratory technician. We also targeted traditional healers, who continue to be strongly involved in local healthcare, and provided training sessions for patients and their families on the symptoms, diagnosis, treatment and complications of haemophilia. A complementary programme of awareness-raising, including the national media, ran alongside the training sessions. Results Overall, the programme involved 495 participants: 213 health care professionals, 24 patients, 79 parents of patients, 126 traditional healers, and 53 media workers. A direct result was development of collaboration between these groups in identifying haemophilia, and the transfer of four patients from a traditional healer's office to hospital for diagnosis and treatment. The number of diagnosed PWH increased from 42 in 2016 to 126 in 2017. Conclusion The integrated haemophilia educational programme, which took into account the nature of the local environment and involved all relevant stakeholders, showed that taking a collaborative approach is a successful strategy for improving diagnosis and care for PWH in Mali. This approach could be relevant in other developing countries.