Over 25 Years of Hope: Development of Lymphatic Filariasis Patient Support Groups in Haiti.

Support groups can create environments that are conducive to healing and well-being, particularly for persons with stigmatizing chronic diseases. In 1998, the support group concept was adapted in Haiti for persons with disabling lymphedema caused by lymphatic filariasis (LF). The project was developed with the expectation that the support group model conceived in the developed world be interpreted and modified by persons affected with lymphedema in the Haitian setting. Initiated with modest financial support within a research initiative to eliminate LF, a total of 50 "Hope Clubs" were formed from 1998 to 2023 across seven communes (districts) located in 3 of Haiti's 10 regional Departments. Documented benefits of the support groups included improved limb self-care, decreased incidence of inflammatory episodes (adenolymphangitis), enhanced self-efficacy, economic benefit through microenterprise, and improved quality of life. Despite challenges of funding shortfalls, natural disasters, and political insecurity, persistence of LF support groups in Haiti highlights the crucial role of group ownership by affected persons and the freedom to reinvent the support group concept in light of local social, cultural, and economic conditions.

Cascading failures in COVID-19 vaccine equity.

Ethical analysis should encompass upstream decisions and their downstream consequences.

Photovoice Lessons from a Peruvian Program in Combatting Stigma for Caregivers of Children with Disabilities.

BACKGROUND: Access to resources for children with disabilities and their caregivers are lacking worldwide, especially for low-and middle-income countries, especially those of Latin origin. Furthermore, decreased social visibility coupled with minimal support available for caregivers can negatively affect their overall mental well-being. Limited community-based participatory research has been done to understand the experiences of caregivers and identify effective measures of support. OBJECTIVES: To explore the impact of childhood disabilities on caregiver well-being and to assess how interactions between caregivers and their community affect their mental well-being. METHODS: This study used photovoice and community-based participatory research methodology. We recruited participants who had children enrolled in a rehabilitative program called Rehabilitation with Hope, located in Huancayo, Peru. Participants were given three photo assignments concerning their experiences as caregivers and they presented their photos at photo discussions after each assignment. We used thematic analysis to identify the main themes that arose from the discussions. RESULTS: Four main themes were identified: stigma, social support, self-esteem, and effects of photovoice. Caregivers often felt stigmatized by the community due to their child's disability. However, they found a stronger sense of social support and overall improved sense of self-esteem through the program and participation in photovoice. CONCLUSIONS: The results of this study suggest the effects of stigma on caregivers may be mitigated through enhanced social support and self-esteem. Additionally, photovoice is an effective tool to combat community stigma by allowing caregivers to share their narratives.

Epidemiology of compassion: A literature review.

Psychology and neuroscience have contributed significantly to advances in understanding compassion. In contrast, little attention has been given to the epidemiology of compassion. The human experience of compassion is heterogeneous with respect to time, place, and person. Therefore, compassion has an epidemiology, although little is known about the factors that account for spatial or temporal clustering of compassion or how these factors might be harnessed to promote and realize a more compassionate world. We reviewed the scientific literature to describe what is known about "risk factors" for compassion towards others. Studies were included if they used quantitative methods, treated compassion as an outcome, and used measures of compassion that included elements of empathy and action to alleviate suffering. Eighty-two studies met the inclusion criteria; 89 potential risk factors were tested 418 times for association with compassion. Significant associations with compassion were found for individual demographic factors (e.g., gender, religious faith); personal characteristics (e.g., emotional intelligence, perspective-taking, secure attachment); personal experience (e.g., previous adversity); behaviors (e.g., church attendance); circumstantial factors during the compassion encounter (e.g., perceptions of suffering severity, relational proximity of the compassion-giver and -receiver, emotional state of the compassion-giver); and organizational features. Few studies explored the capacity to receive, rather than give, compassion. Definitions and measures of compassion varied widely across disciplines; 87% of studies used self-report measures and 39% used a cross-sectional design. Ten randomized clinical trials documented the effectiveness of compassion training. From an epidemiologic perspective, most studies treated compassion as an individual host factor rather than as transmissible or influenced by time or the environment. The causal pathways leading from suffering to a compassionate response appear to be non-linear and complex. A variety of factors (acting as effect modifiers) appear to be permissive of-or essential for-the arising of compassion in certain settings or specific populations. Future epidemiologic research on compassion should take into account contextual and environmental factors and should elucidate compassion-related dynamics within organizations and human systems. Such research should be informed by a range of epidemiologic tools and methods, as well as insights from other scientific disciplines and spiritual and religious traditions.

Safety of integrated preventive chemotherapy for neglected tropical diseases.

BACKGROUND: Preventive chemotherapy (PC) is a central strategy for control and elimination of neglected tropical diseases (NTDs). Increased emphasis has been given to "integration" of NTD programs within health systems and coadministration of NTD drugs offers significant programmatic benefits. Guidance from the World Health Organization (WHO) reflects current evidence for safe drug coadministration and highlights measures to prevent choking of young children during PC. METHODOLOGY: To understand how coadministration of NTD drugs might affect PC safety, we reviewed literature on choking risk in young children and safety of coadministered NTD drugs. To understand current practices of drug coadministration, we surveyed 15 NTD program managers and implementing partners. PRINCIPAL FINDINGS: In high-income countries, choking on medication is an infrequent cause of death in young children. In low-resource settings, data are limited, but age-appropriate drug formulations are less available. During PC, fatal choking, although infrequent, occurs primarily in young children; forcing them to swallow tablets appears to be the major risk factor. The WHO currently recommends 6 drugs and 5 possible drug combinations for use in PC. Of 105 nations endemic for the 5 PC-NTDs, 72 (68.6%) are co-endemic for 2 or more diseases and could benefit from drug coadministration during PC. All 15 survey respondents reported coadministering medications during PC. Reported responses to a child refusing to take medicine included: not forcing the child to do so (60.0%), encouraging the child (46.7%), bringing the child back later (26.7%), offering powder for oral suspension (POS) for azithromycin (13.3%), and having parents or community members intervene to calm the child (6.7%). CONCLUSIONS: Coadministration of NTD drugs during PC appears to be increasingly common. Safety of coadministered PC drugs requires attention to choking prevention, use of approved drug combinations, and increased access to age-appropriate drug formulations.

Ethical challenges and moral distress among field epidemiologists.

BACKGROUND: As 'disease detectives' and directors of public health programs, field epidemiologists play essential roles in protecting public health. Although ethical issues receive considerable attention in medical and research settings, less is known about ethical challenges faced by field epidemiologists in public health programs. Similarly, little is known about moral distress among field epidemiologists, i.e., situations in which they are constrained from acting on what they know to be morally right. Moral distress is strongly associated with empathy fatigue, burnout, reduced job retention, and disengagement. To better understand ethics training needs for field epidemiologists, in February 2019, members of TEPHIConnect, an online and mobile networking platform for Field Epidemiology Training Program (FETP) alumni, were invited to participate in an anonymous survey about ethical challenges and moral distress. RESULTS: Among 126 respondents from 54 countries, leading causes of ethical dilemmas included inadequate informed consent (61%), inequitable allocation of resources (49%), and conflicts of interest (43%). These occur primarily in settings of disease outbreaks (60%); research (55%); and public health programs at the state, province, or national level (45%) or community level (43%). Work-related moral distress was reported by 91% of respondents, including 26% who experience it "frequently" or "almost always." Field epidemiologists working in low- and low-middle income countries were more likely to report moral distress "frequently" or "almost always" than those in higher-income countries (33.0% vs 9.1%, P = 0.006). The most common perceived contributors to moral distress included excessive stress and work demands (30%) and inadequate support from leaders (25%). CONCLUSIONS: Field epidemiologists face significant work-related ethical challenges, which are endemic to public health and political systems. A substantial proportion of field epidemiologists also experience some degree of moral distress, often in association with these challenges. These findings indicate an unmet need among field epidemiologists for support in navigating ethical challenges, as well as for resources to address the human and professional consequences of moral distress.

An observational assessment of the safety of mass drug administration for trachoma in Ethiopian children.

BACKGROUND: The International Trachoma Initiative (ITI) provides azithromycin for mass drug administration (MDA) to eliminate trachoma as a public health problem. Azithromycin is given as tablets for adults and powder for oral suspension (POS) is recommended for children aged <7 y, children <120 cm in height (regardless of age) or anyone who reports difficulty in swallowing tablets. An observational assessment of MDA for trachoma was conducted to determine the frequency with which children aged 6 mo through 14 y received the recommended dose and form of azithromycin according to current dosing guidelines and to assess risk factors for choking and adverse swallowing events (ASEs). METHODS: MDA was observed in three regions of Ethiopia and data were collected on azithromycin administration and ASEs. RESULTS: A total of 6477 azithromycin administrations were observed; 97.9% of children received the exact recommended dose. Of children aged 6 mo to <7 y or <120 cm in height, 99.6% received POS. One child experienced choking and 132 (2%) experienced ≥1 ASEs. Factors significantly associated with ASEs included age 6-11 mo or 1-6 y, non-calm demeanor and requiring coaxing prior to drug administration. CONCLUSIONS: There is a high level of adherence to the revised azithromycin dosing guidelines and low incidence of choking and ASEs.

A mixed-methods exploration into the resilience of community drug distributors conducting mass drug administration for preventive chemotherapy of lymphatic filariasis and onchocerciasis in Côte d'Ivoire and Uganda.

Volunteer community drug distributors (CDDs) have been vital to progress made in the elimination of onchocerciasis and lymphatic filariasis; two neglected tropical diseases amenable to preventive chemotherapy (PC-NTDs). However, formative work in Côte d'Ivoire and Uganda revealed that CDDs can encounter considerable challenges during mass drug administration (MDA). CDDs must be resilient to overcome these challenges, yet little is known about their resilience. This mixed-methods study explored the resilience of CDDs in Côte d'Ivoire and Uganda. The characteristics and experiences of 248 CDDs involved in the 2018 MDAs in Côte d'Ivoire (N = 132) and Uganda (N = 116) were assessed using a micronarrative survey. Thematic analysis of CDDs' micronarratives was used to identify challenges they encountered during MDA. Resilience was assessed using the Connor-Davidson Resilience Scale 25 (CD-RISC-25). Variables from the micronarrative survey found to be individually associated with mean CD-RISC-25 score (P<0.05) through bivariate analyses were included in a multiple linear regression model. Post-hoc, country-specific analyses were then conducted. Thematic analysis showed that CDDs encountered a wide range of challenges during MDA. The aggregate model revealed that CDDs who had positive relationships or received support from their communities scored higher on the CD-RISC-25 on average (P<0.001 for both), indicating higher resilience. These trends were also observed in the country-specific analyses. Mean CD-RISC-25 scores were unaffected by variations in district, age, gender, and length of involvement with the NTD program. Community support during MDA and positive community-CDD relationships appear to be associated with CDDs' personal capacity to overcome adversity. Involving communities and community leadership in the selection and support of CDDs has the potential to benefit their well-being. This study establishes the CD-RISC-25 as a useful tool for assessing the resilience of CDDs. Further research is needed to understand, promote, and support the resilience of this valuable health workforce, upon which NTD programs depend.

Compassionate Leadership: Essential for the Future of Tropical Medicine and Global Health.

Compassion-the awareness of suffering coupled with the desire to relieve that suffering-is an evolved human capacity that offers significant benefits for individuals and organizations. While the relief of suffering is central to tropical medicine and global health, compassion is more often assumed than explicit. Global health leaders participating in a compassionate leadership program recently reported that the most common personal barriers to compassionate leadership include inability to regulate workload, perfectionism, and lack of self-compassion; while the most common external challenges include excessive work-related demands, the legacy of colonialism, and the lack of knowledge on how to lead with compassion. These barriers can be surmounted. Within organizations, leaders are the primary shapers of compassionate cultures. Now is the time to bring our core compassionate values to bear in addressing the "unfinished business" of ensuring global health equity and deconstructing colonialist structures in global health and tropical medicine. Compassionate leadership offers us tools to complete this unfinished business.

Ethical dimensions of neglected tropical disease programming.

The global movement to control and eliminate neglected tropical diseases (NTDs) is grounded in an ethic of social justice, solidarity and health equity. NTD programmes deliver significant health benefits in socially complex environments characterized by poverty and economic disparity. We used two ethics frameworks-principlism and Upshur's public health framework-to examine ethical challenges faced by NTD programmes. They include management of serious adverse reactions associated with preventive chemotherapy, centralization of decision-making, 'opt-out' policies for school-based deworming, incomplete evidence for 'pro-poor' impact and persistent inequities in global partnerships. NTD programmes must actively address ethical challenges while pursuing global health goals.

Evolution of the monitoring and evaluation strategies to support the World Health Organization's Global Programme to Eliminate Lymphatic Filariasis.

The Global Programme to Eliminate Lymphatic Filariasis (GPELF) was established with the ambitious goal of eliminating LF as a public health problem. The remarkable success of the GPELF over the past 2 decades in carrying out its principal strategy of scaling up and scaling down mass drug administration has relied first on the development of a rigorous monitoring and evaluation (M&E) framework and then the willingness of the World Health Organization and its community of partners to modify this framework in response to the practical experiences of national programmes. This flexibility was facilitated by the strong partnership that developed among researchers, LF programme managers and donors willing to support the necessary research agenda. This brief review summarizes the historical evolution of the GPELF M&E strategies and highlights current research needed to achieve the elimination goal.

Keeping communities at the centre of efforts to eliminate lymphatic filariasis: learning from the past to reach a future free of lymphatic filariasis.

Since the launch of the Global Programme to Eliminate Lymphatic Filariasis (GPELF) in 2000, more than 910 million people have received preventive chemotherapy for lymphatic filariasis (LF) and many thousands have received care for chronic manifestations of the disease. To achieve this, millions of community drug distributors (CDDs), community members and health personnel have worked together each year to ensure that at-risk communities receive preventive chemotherapy through mass drug administration (MDA). The successes of 20 y of partnership with communities is celebrated, including the application of community-directed treatment, the use of CDDs and integration with other platforms to improve community access to healthcare. Important challenges facing the GPELF moving forward towards 2030 relate to global demographic, financing and programmatic changes. New innovations in research and practice present opportunities to encourage further community partnership to achieve the elimination of LF as a public health problem. We stress the critical need for community ownership in the current Covid-19 pandemic, to counter concerns in relaunching MDA programmes for LF.

A comprehensive research agenda for zero leprosy.

BACKGROUND: Leprosy control achieved dramatic success in the 1980s-1990s with the implementation of short course multidrug therapy, which reduced the global prevalence of leprosy to less than 1 in 10 000 population. However, a period of relative stagnation in leprosy control followed this achievement, and only limited further declines in the global number of new cases reported have been achieved over the past decade. MAIN TEXT: In 2016, major stakeholders called for the development of an innovative and comprehensive leprosy strategy aimed at reducing the incidence of leprosy, lowering the burden of disability and discrimination, and interrupting transmission. This led to the establishment of the Global Partnership for Zero Leprosy (GPZL) in 2018, with partners aligned around a shared Action Framework committed to achieving the WHO targets by 2030 through national leprosy program capacity-building, resource mobilisation and an enabling research agenda. GPZL convened over 140 experts from more than 20 countries to develop a research agenda to achieve zero leprosy. The result is a detailed research agenda focusing on diagnostics, mapping, digital technology and innovation, disability, epidemiological modelling and investment case, implementation research, stigma, post exposure prophylaxis and transmission, and vaccines. This research agenda is aligned with the research priorities identified by other stakeholders. CONCLUSIONS: Developing and achieving consensus on the research agenda for zero leprosy is a significant step forward for the leprosy community. In a next step, research programmes must be developed, with individual components of the research agenda requiring distinct expertise, varying in resource needs, and operating over different timescales. Moving toward zero leprosy now requires partner alignment and new investments at all stages of the research process, from discovery to implementation.

Comparison of World Health Organization and Demographic and Health Surveys data to estimate sub-national deworming coverage in pre-school aged children.

BACKGROUND: The key metric for monitoring the progress of deworming programs in controlling soil-transmitted helminthiasis (STH) is national drug coverage reported to the World Health Organization (WHO). There is increased interest in utilizing geographically-disaggregated data to estimate sub-national deworming coverage and equity, as well as gender parity. The Demographic and Health Surveys (DHS) offer a potential source of sub-national data. This study aimed to compare deworming coverage routinely reported to WHO and estimated by DHS in pre-school aged children to inform global STH measurement and evaluation. METHODOLOGY: We compared sub-national deworming coverage in pre-school aged children reported to WHO and estimated by DHS aligned geospatially and temporally. We included data from Burundi (2016-2017), Myanmar (2015-2016), and the Philippines (2017) based on data availability. WHO provided data on the date and sub-national coverage per mass drug administration reported by Ministries of Health. DHS included maternally-reported deworming status within the past 6 months for each child surveyed. We estimated differences in sub-national deworming coverage using WHO and DHS data, and performed sensitivity analyses. PRINCIPAL FINDINGS: We compared data on pre-school aged children from 13 of 18 districts in Burundi (N = 6,835 in DHS), 11 of 15 districts in Myanmar (N = 1,462 in DHS) and 16 of 17 districts in the Philippines (N = 7,594 in DHS) following data exclusion. The national deworming coverages estimated by DHS in Burundi, Myanmar, and the Philippines were 75.5% (95% CI: 73.7%-77.7%), 47.0% (95% CI: 42.7%-51.3%), and 48.0% (95% CI: 46.0%-50.0%), respectively. The national deworming coverages reported by WHO in Burundi, Myanmar, and the Philippines were 80.1%, 93.6% and 75.7%, respectively. The mean absolute differences in district-level coverage reported to WHO and estimated by DHS in Burundi, Myanmar, and the Philippines were 9.5%, 41.5%, and 24.6%, respectively. Across countries, coverage reported to WHO was frequently higher than DHS estimates (32 of 40 districts). National deworming coverage from DHS estimates were similar by gender within countries. CONCLUSIONS AND SIGNIFICANCE: Agreement of deworming coverage reported to WHO and estimated by DHS data was heterogeneous across countries, varying from broadly compatible in Burundi to largely discrepant in Myanmar. DHS data could complement deworming data reported to WHO to improve data monitoring practices and serve as an independent sub-national source of coverage data.

First international external quality assessment scheme of nucleic acid amplification tests for the detection of Schistosoma and soil-transmitted helminths, including Strongyloides: A pilot study.

BACKGROUND: Nucleic acid amplification tests (NAATs) are increasingly being used as diagnostic tools for soil-transmitted helminths (STHs; Ascaris lumbricoides, Trichuris trichiura, Necator americanus, Ancylostoma duodenale and A. ceylanicum), Strongyloides stercoralis and Schistosoma in human stool. Currently, there is a large diversity of NAATs being applied, but an external quality assessment scheme (EQAS) for these diagnostics is lacking. An EQAS involves a blinded process where test results reported by a laboratory are compared to those reported by reference or expert laboratories, allowing for an objective assessment of the diagnostic performance of a laboratory. In the current study, we piloted an international EQAS for these helminths (i) to investigate the feasibility of designing and delivering an EQAS; (ii) to assess the diagnostic performance of laboratories; and (iii) to gain insights into the different NAAT protocols used. METHODS AND PRINCIPAL FINDINGS: A panel of twelve stool samples and eight DNA samples was validated by six expert laboratories for the presence of six helminths (Ascaris, Trichuris, N. americanus, Ancylostoma, Strongyloides and Schistosoma). Subsequently this panel was sent to 15 globally dispersed laboratories. We found a high degree of diversity among the different DNA extraction and NAAT protocols. Although most laboratories performed well, we could clearly identify the laboratories that were poorly performing. CONCLUSIONS/SIGNIFICANCE: We showed the technical feasibility of an international EQAS for the NAAT of STHs, Strongyloides and Schistosoma. In addition, we documented that there are clear benefits for participating laboratories, as they can confirm and/or improve the diagnostic performance of their NAATs. Further research should aim to identify factors that explain poor performance of NAATs.

State of deworming coverage and equity in low-income and middle-income countries using household health surveys: a spatiotemporal cross-sectional study.

BACKGROUND: Mass deworming against soil-transmitted helminthiasis, which affects 1 billion of the poorest people globally, is one of the largest public health programmes for neglected tropical diseases, and is intended to be equitable. However, the extent to which treatment programmes for deworming achieve equitable coverage across wealth class and sex is unclear and the public health metric of national deworming coverage does not include representation of equity. This study aims to measure both coverage and equity in global, national, and subnational deworming to guide future programmatic evaluation, investment, and metric design. METHODS: We used nationally representative, geospatial, household data from Demographic and Health Surveys that measured mother-reported deworming in children of preschool age (12-59 months). Deworming was defined as children having received drugs for intestinal parasites in the previous 6 months before the survey. We estimated deworming coverage disaggregated by geography, wealth quintile, and sex, and computed an equity index. We examined trends in coverage and equity index across countries, within countries, and over time. We used a regression model to compute the household correlates of deworming and ecological correlates of equitable deworming. FINDINGS: Our study included 820 883 children living in 50 countries from Africa, the Americas, Asia, and Europe that are endemic for soil-transmitted helminthiasis using 77 Demographic and Health Surveys from December, 2003, to October, 2017. In these countries, the mean deworming coverage in preschool children was estimated at 33·0% (95% CI 32·9-33·1). The subnational coverage ranged from 0·5% to 87·5%, and within-country variation was greater than between-country variation. Of the 31 countries reporting that they reached the WHO goal of more than 75% national coverage, 30 had inequity in deworming, with treatment concentrated in wealthier populations. We did not detect systematic differences in deworming equity by sex. INTERPRETATION: Substantial inequities in mass deworming programmes are common as wealthier populations have consistently higher coverage than that of the poor, including in countries reporting to have reached the WHO goal of more than 75% national coverage. These inequities seem to be geographically heterogeneous, modestly improving over time, with no evidence of sex differences in inequity. Future reporting of deworming coverage should consider disaggregation by geography, wealth, and sex with incorporation of an equity index to complement the conventional public health metric of national deworming coverage. FUNDING: Bill & Melinda Gates Foundation, Stanford University Medical Scientist Training Program.