Award Title: Improving experiences of severe stigmatising skin diseases in Ghana and Ethiopia
Funder: Department of Health and Social Care

Abstract: 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.

Lay Abstract: Aims  We aim to improve outcomes for individuals with leprosy, yaws, Buruli ulcer and cutaneous leishmaniasis which are very severe, infectious skin diseases that stigmatise, disfigure and cause major physical disability, psychological distress and social isolation. Using a group of connected studies in Ethiopia and Ghana we will address major clinical, social and public health challenges associated with these diseases and skin health generally.  Background  These skin diseases are more common in low and middle-income countries. There are major problems with late diagnosis of these diseases, which is exacerbated by a lack of dermatologists and stigma. Adverse outcomes also occur because obtaining and completing effective treatment may be challenging. We need more evidence to help decide which combination of complex treatments work best and which strategies best combat the stigma experienced by affected individuals and their families.  Design and methods      We will assess approaches- called integrated case finding - to find people with these skin diseases in Ghana and Ethiopia. We will engage with and train a range of people in communities including volunteers, health workers and traditional healers. We will teach community members about the diseases and establish a peer support and stigma reduction programme, having assessed which approach will work best, to improve outcomes for those affected by these conditions. We will conduct studies to optimise the supply chain of drugs and assess whether our group of interventions  increases the number of people diagnosed, increases the number completing treatment, improves outcomes and is cost-effective.  We will test which wound dressing works best to heal Buruli ulcer in Ghana.  We will compare a novel anti-bacterial dressing to the routinely used Vaseline dressing in a multicentre randomised controlled trial. We will determine whether the newer dressing is associated with faster wound healing and a better experience for children and adults. We will examine the economic impact and costs of treatment.      We will undertake a study following children and adults with cutaneous leishmaniasis during treatment and for one year afterwards in Ethiopia. This will help us understand how cutaneous leishmaniasis affects patients and the economic impact of the disease. The initial steps will involve focus groups of patient to characterise their experiences, followed by the evaluation of tools to assess treatment outcomes.  Community and public involvement  This proposal has been developed by building on existing partnerships between researchers and other stakeholders including Ministries of Health, patients and community representatives to ensure relevance and impact. We will continue to involve these groups throughout the programme and dissemination activities.  Dissemination  We will share findings widely through public engagement activities, academic publications and presentations, policy papers, presenting to World Health Organization and ministries of health and extensive social media campaigns.

Research Activity Codes: 6.3 MEDICAL DEVICES;8.1 ORGANISATION AND DELIVERY OF SERVICES;7.1 INDIVIDUAL CARE NEEDS
Health Categories: INFECTION;SKIN