The global burden of trichiasis in 2016.

BACKGROUND: Trichiasis is present when one or more eyelashes touches the eye. Uncorrected, it can cause blindness. Accurate estimates of numbers affected, and their geographical distribution, help guide resource allocation. METHODS: We obtained district-level trichiasis prevalence estimates in adults for 44 endemic and previously-endemic countries. We used (1) the most recent data for a district, if more than one estimate was available; (2) age- and sex-standardized corrections of historic estimates, where raw data were available; (3) historic estimates adjusted using a mean adjustment factor for districts where raw data were unavailable; and (4) expert assessment of available data for districts for which no prevalence estimates were available. FINDINGS: Internally age- and sex-standardized data represented 1,355 districts and contributed 662 thousand cases (95% confidence interval [CI] 324 thousand-1.1 million) to the global total. Age- and sex-standardized district-level prevalence estimates differed from raw estimates by a mean factor of 0.45 (range 0.03-2.28). Previously non- stratified estimates for 398 districts, adjusted by ×0.45, contributed a further 411 thousand cases (95% CI 283-557 thousand). Eight countries retained previous estimates, contributing 848 thousand cases (95% CI 225 thousand-1.7 million). New expert assessments in 14 countries contributed 862 thousand cases (95% CI 228 thousand-1.7 million). The global trichiasis burden in 2016 was 2.8 million cases (95% CI 1.1-5.2 million). INTERPRETATION: The 2016 estimate is lower than previous estimates, probably due to more and better data; scale-up of trichiasis management services; and reductions in incidence due to lower active trachoma prevalence

Tropical Data: Approach and Methodology as Applied to Trachoma Prevalence Surveys

PURPOSE: Population-based prevalence surveys are essential for decision-making on interventions to achieve trachoma elimination as a public health problem. This paper outlines the methodologies of Tropical Data, which supports work to undertake those surveys. METHODS: Tropical Data is a consortium of partners that supports health ministries worldwide to conduct globally standardised prevalence surveys that conform to World Health Organization recommendations. Founding principles are health ministry ownership, partnership and collaboration, and quality assurance and quality control at every step of the survey process. Support covers survey planning, survey design, training, electronic data collection and fieldwork, and data management, analysis and dissemination. Methods are adapted to meet local context and needs. Customisations, operational research and integration of other diseases into routine trachoma surveys have also been supported. RESULTS: Between 29th February 2016 and 24th April 2023, 3373 trachoma surveys across 50 countries have been supported, resulting in 10,818,502 people being examined for trachoma. CONCLUSION: This health ministry-led, standardised approach, with support from the start to the end of the survey process, has helped all trachoma elimination stakeholders to know where interventions are needed, where interventions can be stopped, and when elimination as a public health problem has been achieved. Flexibility to meet specific country contexts, adaptation to changes in global guidance and adjustments in response to user feedback have facilitated innovation in evidence-based methodologies, and supported health ministries to strive for global disease control targets

Commentary: Elimination of Guinea Worm Disease in South Sudan through multi-disciplinary actions

South Sudan is now in the pre-certification phase, having gone over sixteen months as of April 2018, with zero reports for cases of Guinea worm disease (GWD). The South Sudan Guinea Worm Eradication Programme (SSGWEP) mobilizes the efforts of thousands of communities, village volunteers, various government institutions and partners, to establish an extensive surveillance system for detection of GWD cases in post-war South Sudan. Beginning in 2006, with the objective of breaking transmission as soon as possible, this system enabled rapid detection (<24 hours after worm emergence), case containment, and prompt delivery of specific interventions – cloth and pipe filters, vector control, provision of safe water and health education – thereby achieving the ultimate elimination of the disease in ten (10) years from 2006 – 2007. This unquestionable success story in South Sudan, was possible through the multidisciplinary actions of key partners, such as The Carter Center, World Health Organization (WHO), UNICEF, and other NGOs with the MoH at the helm of the implementation of the key strategies for GWD eradication

High prevalence of epilepsy in an onchocerciasis-endemic area in Mvolo County, South Sudan: A door-to-door survey

In June 2020, a door-to-door household survey was conducted in Mvolo County, an onchocerciasis-endemic area in South Sudan. A total of 2357 households containing 15,699 individuals agreed to participate in the study. Of these, 5046 (32.1%, 95% CI: 31.4–32.9%) had skin itching and 445 (2.8%, 95% CI: 2.6–3.1%) were blind. An epilepsy screening questionnaire identified 813 (5.1%) persons suspected of having epilepsy. Of them, 804 (98.9%) were seen by a medical doctor, and in 798 (98.1%) the diagnosis of epilepsy was confirmed. The overall epilepsy prevalence was 50.8/1000 (95% CI: 47.6–54.4/1000), while the prevalence of nodding syndrome was 22.4/1000 (95% CI: 20.1–24.9/1000). Younger age, being male, skin itching, blindness, and living in a neighbourhood or village close to the Naam River were risk factors for epilepsy. The annual incidence of epilepsy was 82.8/100,000 (95% CI: 44.1–141.6/100,000). Among children 7–9 years old without epilepsy, 34% were Ov16 seropositive, suggesting high ongoing Onchocerca volvulus transmission, but only 41.9% of them took ivermectin during the last mass distribution. In conclusion, a high prevalence and incidence of epilepsy was observed in Mvolo, South Sudan. Strengthening of the onchocerciasis elimination programme is urgently needed in order to prevent epilepsy in this region

From river blindness to river epilepsy: Implications for onchocerciasis elimination programmes

Current onchocerciasis elimination programmes do not include identification and management of onchocerciasis-associated epilepsy (OAE) in their strategies. Creating awareness about OAE will increase community-directed treatment with ivermectin (CDTI) adherence, particularly in areas of high prevalence, while motivating funders and stakeholders not to relent their efforts in the fight against onchocerciasis. Strengthening onchocerciasis elimination efforts should be prioritised wherever epilepsy prevalence is high in order to reduce OAE-related morbidity and mortality. In such areas, alternative treatment strategies including biannual CDTI, ground larviciding of blackfly breeding sites, and/or treatment with moxidectin should be considered. Addressing the OAE disease burden in these generally remote onchocerciasis-endemic regions confronted with poverty, weak healthcare infrastructures, and insecurity goes beyond current onchocerciasis elimination plans. New strategies with appropriate budgets are required. A morbidity management and disease prevention (MMDP) strategy, fully integrated into the health system, must be developed by multidisciplinary working groups involving neglected tropical disease (NTD) and epilepsy specialists, advocacy experts, and persons from affected communities. ‘River epilepsy’ needs to be urgently recognised and placed in the international development and NTD agendas

Epilepsy-related stigma and cost in two onchocerciasis-endemic areas in South Sudan : a pilot descriptive study

Introduction: Epilepsy is a major public health concern in sub-Saharan Africa, particularly in resource-limited rural villages where persons with epilepsy (PWE) are often confronted with a wide treatment gap, frequent stigma and high cost of epilepsy care. We investigated stigma and economic cost related to epilepsy in the states of Maridi and Amadi in South Sudan, two onchocerciasis endemic areas with high epilepsy prevalence. Methods: Between November 2019 and February 2020, community-based surveys were conducted in eight villages of Maridi and Amadi States. Consenting PWE were identified via a door-to-door approach, and perceived stigma was assessed using the validated Kilifi stigma scale. Additional data about household income, as well as epilepsy-related direct and indirect costs were collected. Results: 239 PWE were recruited (95 from Maridi, 144 from Amadi). Stigma scores were higher in Maridi compared to Amadi (mean scores: 13.9 vs 6.5, p < 0.001). Mean weighted epilepsy costs per month in Maridi (38.4 USD) were double those observed in Amadi (17.6 USD). The main epilepsy-related expenditure was the purchase of anti-epileptic drugs (AED). Stigma scores correlated with epilepsy cost (Spearman-rho = 0.24, p < 0.001) and were positively associated with traditional medicine use (regression estimate = 1.9; p = 0.027). Conclusion: In rural South Sudan, PWE and their families often experienced stigma from the community. Higher perceived stigma was associated with traditional medicine use, which increased the overall cost of epilepsy management. Demystifying epilepsy and making AED more accessible would improve the quality of life of PWE and their families, and reduce the economic burden of epilepsy

The effect of bi-annual community-directed treatment with ivermectin on the incidence of epilepsy in onchocerciasis endemic villages in South Sudan: a study protocol

BACKGROUND: Nodding syndrome (NS) is a devastating epileptic illness of unknown aetiology mainly affecting children 5-15 years of age. Head nodding distinguishes NS from other forms of epilepsy. Other manifestations of the illness include mental and physical growth retardation. Many children die as a result of falling in fires or drowning. Recently, it was shown that NS is only one of the phenotypic presentations of onchocerciasis associated epilepsy (OAE). Despite the strong epidemiological association between epilepsy and onchocerciasis, the causal mechanism is unknown. After implementation of bi-annual community directed treatment with ivermectin (CDTi) and larviciding of rivers in northern Uganda, new cases of NS have ceased, while new cases continue to emerge in South Sudanese onchocerciasis-endemic areas with an interrupted CDTi programme. This study is designed to evaluate the potential effects of bi-annual CDTi on reducing the incidence of NS/OAE in onchocerciasis-endemic areas in South Sudan. METHODS: A pre-intervention door-to-door population-based household survey will be conducted in selected onchocerciasis-endemic villages in Mundri and Maridi Counties, which have a high prevalence of epilepsy. Using a validated questionnaire, the entire village will be screened by community research assistants for suspected epilepsy cases. Suspected cases will be interviewed and examined by a trained clinical officer or medical doctor who will confirm or reject the diagnosis of epilepsy. Bi-annual CDTi will be implemented in the villages and a surveillance system for epilepsy set up. By implementing an epilepsy onchocerciasis awareness campaign we expect to obtain > 90% CDTi coverage of eligible individuals. The door-to-door survey will be repeated two years after the baseline survey. The incidence of NS/OAE will be compared before and after bi-annual CDTi. DISCUSSION: Our study is the first population-based study to evaluate the effect of bi-annual CDTi to reduce the incidence of NS/OAE. If the study demonstrates such a reduction, these findings are expected to motivate communities in onchocerciasis-endemic regions to participate in CDTi, and will encourage policy makers, funders and other stakeholders to increase their efforts to eliminate onchocerciasis