Former Buruli Ulcer Patients’ Experiences and Wishes May Serve as a Guide to Further Improve Buruli Ulcer Management

Background: Buruli ulcer (BU), caused by Mycobacterium ulcerans, is a neglected tropical disease frequently leading to permanent disabilities. The ulcers are treated with rifampicin and streptomycin, wound care and, if necessary surgical intervention. Professionals have exclusively shaped the research agenda concerning management and control, while patients’ perspective on priorities and preferences have not explicitly been explored or addressed. Methodology/Principal findings: To get insight into patient perception of the management and control of Buruli ulcer a mixed methods research design was applied with a questionnaire and focus group discussions among former BU patients. Data collection was obtained in collaboration with a local team of native speakers in Ghana. A questionnaire was completed by 60 former patients and four focus group discussions were conducted with eight participants per group. Former patients positively evaluated both the effectiveness of the treatment and the financial contribution received for the travel costs to the hospitals. Pain experienced during treatment procedures, in particular wound care and the streptomycin injections, and the side-effects of the treatment were negatively evaluated. Former patients considered the development of preventive measures and knowledge on the transmission as priorities. Additionally, former patients asked for improved accessibility of health services, counselling and economic support. Conclusions: These findings can be used to improve clinical management and to guide the international research agenda. Author Summary: Buruli ulcer (BU) is a skin and soft tissue infection possibly leading to deformities and long term consequences with severe impact on patients’ lives. It is one of the neglected tropical diseases. The current research agenda is created solely by health professionals, whereas patients might indicate different priorities. Therefore we conducted qualitative research on former patients’ experience with the BU management and on the priorities for the research agenda as envisaged by patients. We found that the preferences of former patients appeared generally in agreement with the international research agenda. Additionally, they indicated that additional preventive measures, better accessibility to care and pain management were important subjects for them. More counselling and social support in the form of community-based rehabilitation were expected to contribute in dealing with the impact of the disease and to enlarge a public platform for support. For clinical management we found that more information on the disease appears necessary, since former patients indicate they did not know much about the course of treatment and expected side-effects. Involving patients can improve BU management and its research agenda.