Patients’ perceptions about a disease, its effective treatment, and the socio-economic dislocation caused by the illness and related symptoms, generally have a significant impact on when and where to go for diagnosis and treatment. Today, a significant number of people affected by Buruli ulcer still seek treatment too late. There are multiple reasons ranging from beliefs to problems of access to treatment.

Although these beliefs can vary considerably from culture to culture, there are some general common traits, which include:

• If a disease does not follow its expected course, (e.g. “wounds that do not heal”) a supernatural cause such as a curse or witchcraft is often suspected. In such cases, patients seek supernatural cure.
• People with limited resources (particularly those in rural areas) seek medical help first from the least expensive and the closest sources of care. Multiple, simultaneous or sequential sources of care may also be sought (e.g., home treatment, traditional and spiritual healers, before going to the hospital).
• Local understanding of what constitutes a “severe” disease (or in the case of Buruli ulcer, a severe skin lesion).
• Perceived lack of immediate threat to the individual.

In general, the aim of studies in this area is two-fold:

• to assist in the design and evaluation of specific culturally appropriate and behaviorally feasible prevention and treatment interventions;
• to inform policymakers to incorporate findings of such studies in designing and changing policies aimed at managing the disease.

Possible research areas include:

• To determine local explanatory models of skin disorders and Buruli ulcer in particular (signs, causes, relative severities, treatments, perceived threat), local terminology associated with Buruli ulcer, patterns of health-seeking behavior (use of home remedies, traditional healers, local clinics and pharmacies, and other therapeutic resources), and factors influencing these patterns of health-seeking behaviour;
• To determine community opinions of any proposed interventions such as health education, treatment, and community-based rehabilitation;
• To determine the potential role of traditional healers in the early recognition and treatment of Buruli ulcer and the possible use of home and traditional remedies 
• To encourage cooperation between traditional healers and health care providers to improve early detection and care for patients with Buruli ulcer;
• To determine the socio-economic dislocations of social and cultural norms caused by Buruli ulcer and the coping strategies employed by affected people and their family members;
• To determine the impact of Buruli ulcer (including disability) on the lives of the patients and family members;
• To determine the costs of both static (or facility-based) and outreach management of Buruli ulcer. This will include both direct and indirect costs of such management strategies. Such costs studies should also include the assessment of the costs of treatment of various forms of the disease;
• To determine the economic impact of the disease treatment on the health system, the community and the country at large.

Related publications

• Illness meanings and experiences for pre-ulcer and ulcer conditions of Buruli ulcer in the Ga-West and Ga-South Municipalities of Ghana
• Financial burden of health care for Buruli ulcer patients in Nigeria: the patients’ perspective
• “It Is Me Who Endures but My Family That Suffers”: Social Isolation as a Consequence of the Household Cost Burden of Buruli Ulcer Free of Charge Hospital Treatment

How common is Buruli ulcer? Where does it occur? How important is Buruli ulcer compared with other diseases? Is Buruli ulcer moving to new, previously disease-free areas?

There is evidence that Buruli ulcer is gradually increasing in incidence in some countries and reducing in other places and so is its geographic spread. The disease can suddenly appear in a new area which has previously been free or silent for a long time. However, because most cases of Buruli ulcer occur in poor rural communities in sub-Saharan Africa and other developing countries, surveillance of the disease may be poor and under-reporting could be widespread. 

Many theories have been proposed to explain the emergence of Buruli ulcer – such as mining, damming of rivers and deforestation. But we cannot test these theories unless we can accurately map the location and incidence of Buruli ulcer.

Priority areas for research therefore include the mapping of the disease and the estimate of prevalence and incidence in endemic countries.

Related publications

• Mapping the global distribution of Buruli ulcer: a systematic review with evidence consensus
• Buruli ulcer: Number of new reported cases (data by country)

• Centers for Disease Control and Prevention (CDC), Atlanta, Georgia, USA
• Emory University, Atlanta, USA
• Harvard University, Cambridge, MA, USA
• John Hopkins University, Baltimore, USA
• Kumasi Centre for Collaborative Research in Tropical Medicine (KCCR), Kumasi, Ghana
• Leprosy Research Center, Tokyo, Japan
• Ludwig- Maximilians-Universität München, Munich, Germany 
• Noguchi Memorial Institute for Medical Research, Accra, Ghana
• Pasteur Institute, Paris, France
• Pasteur Institute, Abidjan, Côte d’Ivoire
• Pasteur Centre of Cameroon Yaoundé, Cameroon
• Pasteur Institute of Guyana, Cayenne, French Guyana
• Swiss Tropical and Public Health Institute, Basel, Switzerland
• University of Melbourne, Victoria, Australia
• University of London, London, UK
• Victorian Infectious Diseases Reference Laboratory, Melbourne, Australia
• Université d'Angers, France