Facteurs socioculturels et contrôle de la trypanosomiase humaine africaine en République démocratique du Congo

Human African Trypanosomiasis (HAT), also known as “sleeping sickness” is a parasitic disease caused by protozoa of the species Trypanosoma. There are two types that infect humans, Trypanosoma brucei gambiense and Trypanosoma brucei rhodesiense. The strategy used to control sleeping sickness consists of early case detection and treatment of patients, together with vector control. Meanwhile, utilization/access to HAT screening by the affected communities remains a major challenge. Adherence to active screening programs with mobile units was below 50% in certain endemic villages end of the 90’s. Moreover, utilization of fixed health facilities in DRC is so low that it compromises passive case finding. Our hypothesis is that this low utilization of health services is caused by a problem of acceptance of case detection and treatment of HAT by the communities living in the HAT transmission zones. This compromises the target of the international community to eliminate HAT as a public health problem by 2020. This thesis wants to explore and tries to generate more knowledge on the socio-cultural aspect that is often neglected in the control of HAT.
We conducted five studies to address the lack of community participation in HAT screening and treatment activities and the relation with acceptance of these services.
The first study evaluated the results of HAT treatment by retrospectively analyzing data of the routine HAT control program for the period 2006-2008.
Afterwards we performed three qualitative studies consisting of focus group discussions and individual interviews to document the socio-cultural dimension of the fight against HAT. The first study explored the community perceptions regarding sleeping sickness. The second study explored the perceptions regarding HAT treatment and a third study focused on diagnostic practices of health professionals in low-resource settings facing a neurological syndrome.
The fifth study consists of a household survey, focus group discussions and individual interviews to explore community perception regarding health in general and health services. We compared the identified barriers to screening and treatment of HAT with awareness messages on sleeping sickness used by the HAT control program in DRC and we developed strategic recommendations. The evaluation of performance indicators for treatment showed that compliance with post-treatment follow-up is very poor: 25% for the first post-treatment follow-up examination at six months and less than 1% of the patients returns for the final examination at 24 months. In this study we also observed a treatment failure rate of respectively 30% and 22% for melarsoprol and pentamidine in Kasai-Oriental. However, these date are difficult to interpret because of an incomplete denominator. As only few patients return for follow-up visits, this proportion is probably biased towards those in treatment failure.
The study on the perception of sleeping sickness shows that the disease is well known amongst the communities living in the endemic areas. However, several screening and treatment barriers were identified. The most important are: drug toxicity, financial barriers, the incompatibility between the itineraries of the mobile screening teams and the local communities’ activities, the prohibitions related to HAT treatment, lack of confidentiality and fear of lumbar punctures. The study on the perceptions regarding HAT treatment show that melarsoprol is perceived as a toxic drug and is nicknamed the ‘taboo drug’. On the other hand the NECT regime is perceived as the new drug that is less toxic and that has abolished all the taboos of melarsoprol with the important exception of sexual intercourse during the treatment period and the post-treatment follow-up period of six months.
The prohibitions have been established empirically by healthcare providers and communities to mitigate the side effects of the melarsoprol regimen. Violating these restrictions is believed to cause severe and sometimes mortal complications. Communities adhere strictly to these prohibitions and this constitutes a barrier for HAT screening and treatment.
The study focusing on diagnostic work-up of neurological syndromes in low-resource settings by health care providers has shown that in rural areas diagnosis is usually clinical. Barriers to confirmation of diagnosis are mainly related to the purchasing power of the patient. Other reported barriers are a lack of diagnostic tools and the communities’ perceptions associated with the care provider. Clinicians are perceived as diviners being able to directly identify the cause of the illness without using laboratory tests. The study regarding the perceptions on health and health services has shown that ability to work (82%) and ability to move (66%) are the most perceived signs of good health. 90% of the household responsibles positively perceive the health of their family. The opinions on the health services are divided.
The studies presented in this thesis have generated new insights on the socio-cultural dimension of HAT. The analysis of the awareness messages on HAT in DRC compared with the reported HAT screening and treatment barriers have shown that
although these sociocultural aspects are real bottlenecks in the dynamic of the fight against HAT, they are not targeted by the communication on HAT.
The prospects for communities at risk of HAT should be addressed through continuous dialogue between health professionals and communities adapted to local realities.
It will thus be possible to operationally improve the information strategies, education and communication, and more broadly, screening and treatment of HAT by integrating the socio-cultural dimension in the fighting policy against sleeping sickness.