Improving haemophilia diagnosis in developing countries: the Malian experience

In January 2016, we initiated an innovative two-year prospective study designed to raise awareness and improve the diagnosis of haemophilia and other bleeding disorders in Mali. The study focused on four regions of Mali (Kayes, Sikasso, Segou and Mopti) and the district of Bamako, the capital city. Here, we report the main overall results and detailed results from the Sikasso group.

With the help of the Malian NMO, we sought to promote an integrated approach to building capacity in the diagnosis of haemophilia based on training and awareness-raising, taking into account strategies previously reported in the literature – for example, in a single treatment centre in Senegal and building a national haemophilia treatment network in Brazil – and the standards proposed for economically developing countries ^{[12,13,14,15]}. It was also important to consider the local environment and healthcare landscape, and to include all relevant stakeholders.

Those targeted included medical doctors, nurses and laboratory technicians; traditional healers, who continue to play a significant role in healthcare in Mali; opinion leaders and the media; and haemophilia patients and their families. The healthcare department of the Malian armed forces (Services de Santé des Armées) was also included, as it is involved in the treatment and provision of care for both civilian and military patients.

The training sessions were delivered by health care professionals using both oral and video content, and included information about haemophilia symptoms, diagnosis, treatment and complications. The sessions were multidisciplinary. Theoretical training was followed up with practical sessions in the trainees’ hospital laboratory. Learning was enriched by patient testimonials provided by the Malian Haemophilia Society. Before and after each session, the effectiveness of training was determined by formal assessment (10 questions about haemophilia and its management). The sessions were complemented by awareness-raising activities, including public or professional meetings, television and radio broadcasts, and meetings with health authorities, students and media organisations.

Through the training sessions, participants developed a local strategy for identifying people with haemophilia and including them in the national bleeding disorder registry. A suspected case was defined as a patient with a familial or personal bleeding history. Individuals in whom haemophilia was suspected were referred to the district hospital for measurement of prothrombin time (PT) and activated partial thrombin time (aPTT). Alternatively, patients could be identified when routine blood testing revealed coagulation abnormalities – for example, during preparation for surgery. Patients with evidence of abnormal coagulation were then referred to the haemophilia treatment centre to confirm the diagnosis, obtain treatment and join the register of bleeding disorders. With the involvement of the Malian Department for Traditional Medicine (within the National Institute for Research on Public Health, part of the Ministry of Health), we organised special training sessions for traditional healers in each region. They were informed of the study and invited to refer their patients for hospital investigation if signs and symptoms led them to suspect a bleeding disorder.

The underdiagnosis of haemophilia and other bleeding disorders in developing countries has prompted the WFH to focus its strategy on improving haemophilia care in these areas, through reducing the number of undiagnosed patients, increasing access to treatment, reducing joint disabilities, and generally improving quality of life for PWH ^[2]. To work on the ground, it is important that any strategy takes into account the realities of the population and their environment. Our approach in Mali was to provide an integrated programme to improve awareness and diagnosis of haemophilia, involving all relevant stakeholders, thereby improving access to care through an innovative strategy based on three pillars:

The identification of social aspects particular to the local population, such as faith, culture and economic capacity

Ideally, this approach is a collaborative model that involves the WFH, laboratories, patients and their families, the government, healthcare providers, and other relevant local stakeholders.

In many African countries, the population continues to approach traditional healers for solutions to problems with their health ^[16]. Around 80% of the Malian population believe in traditional medicine and use it as the first point of access for the treatment of health issues ^[16]. In Africa, bleeding diseases are frequently associated with traditional belief and myth, such as offending traditional spiritual laws and witchcraft. Additionally, traditional opinion leaders, including religious and local leaders, play a crucial rule in African society, and their influence can have a positive or negative impact on the popular acceptance of any new idea or project ^[17,18]. To ensure the successful implementation of a programme that aims to improve haemophilia care in this environment, it therefore is important to take these elements into consideration.

Good collaboration between traditional healers, patient families, opinion leaders and health care professionals during the study led to in an increase in newly diagnosed patients. Improving the knowledge of traditional healers resulted in their involvement in transferring patients from their own offices to treatment centres. Participants in the training sessions had the opportunity to ask questions and did so regularly, which we believe is also an indicator of their success.

The synergy between the WFH and NNHF made it possible to provide training, diagnosis and care for a variety of stakeholders. The training sessions and awareness-raising activities were supported by the NNHF, while diagnostic facilities, drugs for synovitis and clotting factors were covered by the WFH twinning and humanitarian aid programmes. In developing countries with limited resources, such as those found across sub-Saharan Africa, this kind of collaboration has huge benefits for capacity building and improvement in haemophilia care.

Haemophilia is a rare disease which receives little attention in comparison to the tropical infectious diseases prevalent on the African continent. Involving local opinion leaders could be the best way to improve this situation in Africa, as the population is generally more willing to listen to them. Their endorsement could be key to the success of raising awareness of haemophilia and other bleeding disorders.

Implementing haemophilia care in an environment where there is little or no access to treatment is a step-by-step process that requires consideration of local culture, faith and other social aspects if it is to be successful. WFH guidance stresses the importance of patient organisations in developing haemophilia care. This requires a great degree of motivation and, in the context of sub-Saharan Africa, may also carry a risk of stigmatising patients. It is perhaps more practical for health care professionals to take the first steps towards developing and improving the care environment. Following this lead, special research and training programmes, participation in patient meetings, and the advocacy of health care professionals would then enable new patient organisations to grow in such a way that they are sustainable.

Capacity building and improving care for haemophilia and other rare bleeding disorders in developing countries can be achieved if the local environment and all relevant stakeholders are taken into account. In the case of Mali, this involved the inclusion of patients and their families, health care providers and traditional healers in a training programme, and an awareness-raising campaign linked with the national media. This has proven to be a successful strategy, resulting in an increase in the number of patients diagnosed with haemophilia and linked to care. As such, it may serve as a beneficial model to follow in other developing countries where haemophilia and other bleeding disorders are under-diagnosed.