'My feet cannot stand on their own': podoconiosis patient healthcare expenditures and income impacts in Rwanda.

BACKGROUND: Podoconiosis is a progressive and debilitating form of tropical lymphoedema endemic to Rwanda. Although the physical and psychological consequences are well known, few studies have evaluated the financial burden of podoconiosis. METHODS: This cross-sectional, quantitative study aimed to characterize direct treatment costs and impacts on annual earnings among individuals living with podoconiosis. Participants from two highly endemic districts were invited to complete a survey focused on health-seeking history, insurance status, out-of-pocket costs and income changes. Direct treatment costs included medical expenditures (consultation, diagnostics, medication) and non-medical expenditures (food, transportation, accommodation). RESULTS: Overall, 226 adults (≥18 y of age) diagnosed with podoconiosis participated. Most had access to community-based health insurance (91.6%) but were unable to work (71.7%). Respondents sought care from health centres/posts (61.9%), hospitals (25.1%), traditional healers (5.8%) and/or community health workers (4.0%). On average, study participants paid US$32.50 (range US$0-779.23) annually, or 11.7% of their household salary, on podoconiosis treatments. CONCLUSIONS: This study demonstrates the significant financial burden of podoconiosis on individuals and their communities. Increased attention on integrating podoconiosis management into primary care systems and testing cost-effective solutions is needed to protect those who are most vulnerable.

Doctoral research, COVID-19, and political crisis in Ethiopia, Sudan, Rwanda, and the UK: challenges, responses, and recommendations.

Background: Conducting doctoral research is a challenging endeavour, a challenge which as the growing literature on the subject has shown, the COVD-19 pandemic has made even more so. For some doctoral researchers, however, the pandemic has also been accompanied by political unrest and military conflict, putting them and their networks at risk and making their research especially difficult to sustain. Methods: We have used a collaborative auto-ethnography, and we, a group of seven doctoral researchers based in Ethiopia, Rwanda, Sudan and UK have written our experiences. Results: Drawing upon the results of a collaborative auto-ethnography (CAE), this article records and discusses the experiences of a group of doctoral researchers who with the support of their organisation, the Social Science for Severe Stigmatised Skin Diseases (5S) Foundation, have been attempting to cope with both the pandemic and internal instability and strife. After firstly setting the context, the article explains why for the purposes of this paper CAE was adopted as our method, and then documents and discusses the experiences of seven doctoral researchers based in Ethiopia, Sudan, Rwanda, and the UK, doing so in terms of four different themes: New Ways of Working and Its Impact, Change and Delay, Mental Health and Well-Being Impact, and Qualities and Capacities. Conclusion: What these experiences tell us is that this group of doctoral researchers have found themselves in extremely challenging situations, which have placed exceptionally high demands on them and their support networks, and this has had an impact on their health and well-being although also been the catalyst for some more positive development. Given their lived experiences, the article finishes with a series of recommendations for future research projects of this kind.

Podoconiosis instruction at nursing schools in Kenya, Rwanda, and Uganda.

BACKGROUND: Podoconiosis is a preventable, progressive, and non-infectious form of elephantiasis that can contribute to significant disability and economic burden when not treated early. Nurses play a critical role in early detection and response in rural Africa, but it is unclear if they receive adequate training on podoconiosis. We aimed to characterize podoconiosis instruction at all government accredited, post-secondary nursing institutions in three African countries. METHODS: Data for this cross-sectional study was collected through a quantitative survey with several open-answer questions. Through a rigorous online search, we identified all post-secondary institutions in Kenya, Rwanda and Uganda accredited to teach human nursing. A total of 289 accredited programs, including 85 certificate, 56 degree and 148 diploma programs were invited to participate. Respondents completed surveys online or by telephone. Measures focused on podoconiosis knowledge, perceptions of quality/quantity of podoconiosis instruction, and barriers to sufficient podoconiosis education. RESULTS: We obtained information about 212 curricula across 149 nursing institutions in the three countries (participation rate: 73.4%). Podoconiosis coverage was limited across programs (certificate-24.1%; diploma-55.6%; degree-30.3%). Most respondents felt that the quality and quantity of instruction were insufficient (60.6%, 62.9%), respectively. Exclusion from government curricula, low priority and faculty lack of knowledge were commonly reported barriers to podoconiosis inclusion. CONCLUSIONS: This study demonstrated clear gaps in podoconiosis training for nurses across the three countries and highlights a serious challenge in eliminating podoconiosis as a public health problem. Interventions to improve nurses' knowledge could include the development and free distribution of podoconiosis teaching materials, designed for integration into pre-existing courses.

High levels of depressive symptoms among people with lower limb lymphoedema in Rwanda: a cross-sectional study.

BACKGROUND: There is a growing body of evidence that mental distress and disorder are common among people with lower limb lymphoedema, although no research has been conducted on this subject in Rwanda. METHODS: This research was embedded within a mapping study to determine the national prevalence and geographical distribution of podoconiosis in Rwanda. Using a cluster sampling design, adult members of households within 80 randomly selected sectors in all 30 districts of Rwanda were first screened and 1143 patients were diagnosed with either podoconiosis (n=914) or lower limb lymphoedema of another cause (n=229). These 1143 participants completed the Patient Health Questionnaire (PHQ)-9 to establish the prevalence of depressive symptoms. RESULTS: Overall, 68.5% of participants reported depressive symptoms- 34.3% had mild depressive symptoms, 24.2% had moderate, 8.8% moderately severe and 1.2% severe depressive symptoms. The mean PHQ-9 score was 7.39 (SD=5.29) out of a possible 0 (no depression) to 27 (severe depression). Linear regression showed unemployment to be a consistently strong predictor of depressive symptoms; the other predictors were region (province), type of lymphoedema and, for those with podoconiosis, female gender, marital status and disease stage. CONCLUSIONS: Levels of depressive symptoms were very high among people with lower limb lymphoedema in Rwanda, which should be addressed through holistic morbidity management and disability prevention services that integrate mental health, psychosocial and economic interventions alongside physical care.

Podoconiosis in Rwanda: Knowledge, attitudes and practices among health professionals and environmental officers.

BACKGROUND: Podoconiosis is a neglected tropical disease commonly found in volcanic regions, where soil is rich in silica. It usually manifests as bilateral lower limb edema. The majority of people affected by podoconiosis are farmers who do not wear shoes. The condition was recently documented in all 30 districts in Rwanda but knowledge, attitudes and practices (KAP) of Rwandan health professionals and environmental officers towards podoconiosis are unknown. METHODOLOGY/FINDINGS: The objective of this study was to assess the knowledge, attitudes and practices (KAP) of Rwandan health providers and environmental officers towards podoconiosis in order to improve patient healthcare experiences and health outcomes, and to reduce stigma against affected individuals. To achieve this goal, we administered a KAP assessment to physicians (N = 13), nurses/midwives (N = 59), community health workers (N = 226), and environmental officers (N = 38) in the third highest podoconiosis prevalence district in Rwanda (Musanze). All 336 respondents had heard of podoconiosis, but 147 (44%) respondents correctly identified soil as the only direct cause of podoconiosis. The awareness of signs and symptoms and risk groups was lower than any other category (31.5% and 47.5%, respectively). The overall attitude toward podoconiosis was positive (86.1%), with CHWs least likely to harbor negative beliefs against podoconiosis patients. One particular area where most respondents (76%) expressed negative attitude was that they saw people with podoconiosis as a threat to their own health and their family's health. Prescription of antibiotics and use of ointments/soap to manage wounds was low (5% and 32.2%, respectively), in part due to supply shortages at health facilities. CONCLUSIONS: This study identified clear gaps in health provider knowledge and practices that affect patient care for those with podoconiosis. Improved access to essential medicines at health facilities and podoconiosis-focused training sessions for practicing health providers are necessary to minimize the burden and stigma of affected individuals.

'Far from the views of decision-makers': podoconiosis instruction at medical schools across endemic countries in Africa.

BACKGROUND: Podoconiosis is a neglected tropical disease that causes significant physical, emotional and financial suffering, especially among impoverished rural farmers. Sufficient physician training is integral to optimizing patient outcomes through timely diagnosis and appropriate management. Therefore we sought to characterize podoconiosis instruction offered to medical students in endemic African countries. METHODS: We invited faculty from 170 medical schools in all podoconiosis-endemic African countries to provide information about podoconiosis inclusion in medical curricula. Surveys were available in French and English and captured podoconiosis knowledge, quantity/quality of instruction, ranking of importance relative to other diseases and barriers for improvement. Respondents voluntarily shared responses online or by telephone. RESULTS: Study participants provided information about curricula at 97 medical schools across 14 countries. In total, 42.6% of schools across nine countries offered podoconiosis-specific instruction; most respondents felt that the quality (60.4%) and quantity (61.5%) of instruction was insufficient. Common barriers to sufficient training included exclusion from government curricula, prioritization according to caseload and scarce epidemiological data. CONCLUSIONS: Our study demonstrates widespread neglect in podoconiosis training for physicians in endemic countries. Government support is needed to ensure curricula match the needs of health workers practicing in rural, low-income regions.

Individual and familial characteristics of patients with podoconiosis attending a clinic in Musanze District, Rwanda: A retrospective study.

BACKGROUND: Podoconiosis is a progressive swelling of the legs affecting genetically susceptible people who live in areas with irritant red clay soils and walk barefoot. The disease is a public health concern in many countries, including Rwanda. METHODS: This retrospective study described individual and familial characteristics of patients with podoconiosis attending the Heart and Sole Africa (HASA) clinics in Rwanda. Data on patient characteristics and family history were retrieved from electronic medical records (January 2013 - August 2019). A multiple regression analysis was used to explore factors influencing age of onset of podoconiosis. RESULTS: Among 467 patients with podoconiosis, the mean (standard deviation) age of onset was 34.4 (19.6) years, 139 (29.8%) patients developed podoconiosis at <20 years of age, 417 (89%) came from Musanze or neighboring Burera Districts, and 238 (51.0%) had a family history of podoconiosis. Increasing patient age was associated with older age at onset of disease (p<0.001), while an increased number of relatives with podoconiosis (p<0.002) was significantly associated with earlier disease onset. CONCLUSION: Most patients with podoconiosis were women, and more than half had a family history of podoconiosis. An increased number of relatives with podoconiosis was associated with a significantly younger age at disease onset.

Parasite associations predict infection risk: incorporating co-infections in predictive models for neglected tropical diseases.

BACKGROUND: Schistosomiasis and infection by soil-transmitted helminths are some of the world's most prevalent neglected tropical diseases. Infection by more than one parasite (co-infection) is common and can contribute to clinical morbidity in children. Geostatistical analyses of parasite infection data are key for developing mass drug administration strategies, yet most methods ignore co-infections when estimating risk. Infection status for multiple parasites can act as a useful proxy for data-poor individual-level or environmental risk factors while avoiding regression dilution bias. Conditional random fields (CRF) is a multivariate graphical network method that opens new doors in parasite risk mapping by (i) predicting co-infections with high accuracy; (ii) isolating associations among parasites; and (iii) quantifying how these associations change across landscapes. METHODS: We built a spatial CRF to estimate infection risks for Ascaris lumbricoides, Trichuris trichiura, hookworms (Ancylostoma duodenale and Necator americanus) and Schistosoma mansoni using data from a national survey of Rwandan schoolchildren. We used an ensemble learning approach to generate spatial predictions by simulating from the CRF's posterior distribution with a multivariate boosted regression tree that captured non-linear relationships between predictors and covariance in infection risks. This CRF ensemble was compared against single parasite gradient boosted machines to assess each model's performance and prediction uncertainty. RESULTS: Parasite co-infections were common, with 19.57% of children infected with at least two parasites. The CRF ensemble achieved higher predictive power than single-parasite models by improving estimates of co-infection prevalence at the individual level and classifying schools into World Health Organization treatment categories with greater accuracy. The CRF uncovered important environmental and demographic predictors of parasite infection probabilities. Yet even after capturing demographic and environmental risk factors, the presences or absences of other parasites were strong predictors of individual-level infection risk. Spatial predictions delineated high-risk regions in need of anthelminthic treatment interventions, including areas with higher than expected co-infection prevalence. CONCLUSIONS: Monitoring studies routinely screen for multiple parasites, yet statistical models generally ignore this multivariate data when assessing risk factors and designing treatment guidelines. Multivariate approaches can be instrumental in the global effort to reduce and eventually eliminate neglected helminth infections in developing countries.

Mapping Soil-Transmitted Helminth Parasite Infection in Rwanda: Estimating Endemicity and Identifying At-Risk Populations.

Soil-transmitted helminth (STH) infections are globally distributed intestinal parasite infections caused by Ascaris lumbricoides, Trichuris trichiura, and hookworms (Ancylostoma duodenale and Necator americanus). STH infection constitutes a major public health threat, with heavy burdens observed in many of the world's tropical and subtropical regions. Mass drug administration and sanitation improvements can drastically reduce STH prevalence and associated morbidity. However, identifying targeted areas in need of treatment is hampered by a lack of knowledge on geographical and population-level risk factors. In this study, we applied Bayesian geostatistical modelling to data from a national school-based STH infection survey in Rwanda to (1) identify ecological and population-level risk factors and (2) provide comprehensive precision maps of infection burdens. Our results indicated that STH infections were heterogeneously distributed across the country and showed signatures of spatial clustering, though the magnitude of clustering varied among parasites. The highest rates of endemic clustering were attributed to A. lumbricoides infection. Concordant infection patterns among the three parasite groups highlighted populations currently most at-risk of morbidity. Population-dense areas in the Western and North-Western regions of Rwanda represent areas that have continued to exhibit high STH burden across two surveys and are likely in need of targeted interventions. Our maps support the need for an updated evaluation of STH endemicity in western Rwanda to evaluate progress in MDA efforts and identify communities that need further local interventions to further reduce morbidity caused by STH infections.

Geographical distribution and prevalence of podoconiosis in Rwanda: a cross-sectional country-wide survey.

BACKGROUND: Podoconiosis is a type of tropical lymphoedema that causes massive swelling of the lower limbs. The disease is associated with both economic insecurity, due to long-term morbidity-related loss of productivity, and intense social stigma. Reliable and detailed data on the prevalence and distribution of podoconiosis are scarce. We aimed to fill this data gap by doing a nationwide community-based study to estimate the number of cases throughout Rwanda. METHODS: We did a population-based cross-sectional survey to determine the national prevalence of podoconiosis. A podoconiosis case was defined as a person with bilateral, asymmetrical lymphoedema of the lower limb present for more than 1 year, who tested negative for Wuchereria bancrofti antigen (determined by Filariasis Test Strip) and specific IgG4 (determined by Wb123 test), and had a history of any of the associated clinical signs and symptoms. All adults (aged ≥15 years) who resided in any of the 30 districts of Rwanda for 10 or more years were invited at the household level to participate. Participants were interviewed and given a physical examination before Filariasis Test Strip and Wb123 testing. We fitted a binomial mixed model combining the site-level podoconiosis prevalence with continuous environmental covariates to estimate prevalence at unsampled locations. We report estimates of cases by district combining our mean predicted prevalence and a contemporary gridded map of estimated population density. FINDINGS: Between June 12, and July 28, 2017, 1 360 612 individuals-719 730 (53%) women and 640 882 (47%) men-were screened from 80 clusters in 30 districts across Rwanda. 1143 individuals with lymphoedema were identified, of whom 914 (80%) had confirmed podoconiosis, based on the standardised diagnostic algorithm. The overall prevalence of podoconiosis was 68·5 per 100 000 people (95% CI 41·0-109·7). Podoconiosis was found to be widespread in Rwanda. District-level prevalence ranged from 28·3 per 100 000 people (16·8-45·5, Nyarugenge, Kigali province) to 119·2 per 100 000 people (59·9-216·2, Nyamasheke, West province). Prevalence was highest in districts in the North and West provinces: Nyamasheke, Rusizi, Musanze, Nyabihu, Nyaruguru, Burera, and Rubavu. We estimate that 6429 (95% CI 3938-10 088) people live with podoconiosis across Rwanda. INTERPRETATION: Despite relatively low prevalence, podoconiosis is widely distributed geographically throughout Rwanda. Many patients are likely to be undiagnosed and morbidity management is scarce. Targeted interventions through a well coordinated health system response are needed to manage those affected. Our findings should inform national level planning, monitoring, and implementation of interventions. FUNDING: Wellcome Trust.