Improving experiences of severe stigmatising skin diseases in Ghana and Ethiopia

Research question What community and health facility strategies will improve experiences of severe stigmatising skin diseases (SSSDs) in Ethiopia and Ghana? Background SSSDs are a significant cause of disabling physical and psychological morbidity, disproportionately affecting impoverished and marginalised communities in low and middle-income countries. Most are communicable but despite established, effective antimicrobial therapies remain intractable public health problems. Early diagnosis and treatment reduce disability, but many individuals are diagnosed late. Explanations include low awareness in at-risk populations (including health systems), and inaccessibility and prohibitive costs of healthcare. Individuals often seek treatment from traditional practitioners. When diagnosed, prolonged (and sometimes painful) treatment and management makes adherence challenging. These problems are compounded by stigma and discrimination. In our work, we will focus on leprosy, yaws, Buruli ulcer (BU) and cutaneous leishmaniasis (CL), all have been identified as priority diseases in our study countries, Ghana and Ethiopia. To align with WHO strategy we take an integrated approach to SSSDs. Aims and Objectives We aim to improve outcomes for people with SSSDs by strengthening the care cascade through scalable strategies for earlier detection, improving management to reduce disability and counteracting stigma. This will be achieved through a series of linked studies in Ghana and Ethiopia addressing the following objectives: (1) to evaluate integrated community-based strategies for early diagnosis, adherence support and stigma reduction; (2) to undertake facility-based trials of dressings for BU; (3) to develop clinical and patient reported outcome measures for CL; (4) to promote collaboration and build research capacity in Ghana and Ethiopia. Methods In both Ghana and Ethiopia, we will develop and evaluate complex interventions for early case detection, diagnosis, improving treatment adherence and addressing stigma using the MRC framework of: (i) comprehensive formative research to develop a community of practice, (ii) intervention development using co-creative approaches, (iii) piloting, followed by (iv) impact evaluation, including health economic and detailed process evaluation. Combined, this process will take 42 months. In Ghana, we will address the specific challenge of delayed wound healing in BU by conducting a multicentre randomised controlled trial to compare Dialkylcarbamoyl chloride-coated dressings with Vaseline-gauze dressings. We will determine rates of healing at 16 weeks, and secondary infection. Improved dressings for BU may allow wound care to be undertaken in a community setting minimising impact on the individual and their family. In Ethiopia we will assess the utility of suggested clinical and patient centred outcomes for individuals with CL. We will develop a clinical severity measure to assess disease activity and determine the frequency and severity of adverse effects in a prospective cohort of patients with parasitological confirmed CL. Anticipated Impact and Dissemination Our interconnected studies will strengthen the care cascade and contribute to better health outcomes for patients and communities, and we anticipate rapid meaningful impact. Our interventions will further benefit other SSSDs and skin health generally, and results will translate to other endemic regions. We will involve affected individuals, community organisations, programme partners and health care agencies in the development of the work and share all outputs openly.