Action-research: Evaluation & follow-up care for patients with noma

Following field research conducted in spring 2011 with 400 patients treated for cleft lip/palate, this rural noma project will audit the quality of facial reconstructive surgical care and the social outcomes for patients with noma, a gangrenous tropical disease caused by malnutrition. The World Health Organization estimates the global yearly incidence to be approximately 140,000, of which 100,000 are between 1 and 7 years old, living in sub-Saharan Africa. Some 90 percent of patients die. This project aims to reach 50-70 survivors in the Hararghe region of eastern Ethiopia who have received one or more surgical treatments.

Traveling tens and sometimes hundreds of kilometres from the asphalt road to reach patients in their home or at their nearest clinic, a qualified medic will carry out a check-up and a semi-structured interview with participating patients. The study will assess the medical and social outcomes for treated patients, make referrals for further care if necessary, and gauge local understanding of noma and local health-seeking behaviours to inform Project Harar’s established health outreach programme.

Using epidemiological techniques (previously used by Marck &Fieger in northern Nigeria), it is possible to use the numbers of cleft and noma patients to calculate the prevalence of noma in a given food-insecure environment. Noma is among several forgotten tropical diseases and efforts to reach the survivors are hampered by low global resourcing and a lack of information in policymakers’ hands. Project Harar’s dedicated work offers the possibility of filling several of these gaps in the Horn of Africa.

Project Harar’s team in Ethiopia is facilitating this research in conjunction with Dr Nadia Lafferty of the Liverpool School of Tropical Medicine and social work experts in the two local authorities. The charity’s academic supervisor is Prof Mark McGurk. We are grateful to the Winds of Hope Foundation for their contribution towards this challenging initiative, helping to tackle this shocking disease of poverty.

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