Community-based field implementation scenarios of a short message service reporting tool for lymphatic filariasis case estimates in Africa and Asia

BACKGROUND: Lymphatic filariasis (LF) is a neglected tropical disease (NTD) targeted for global elimination by 2020. Currently there is considerable international effort to scale-up morbidity management activities in endemic countries, however there remains a need for rapid, cost-effective methods and adaptable tools for obtaining estimates of people presenting with clinical manifestations of LF, namely lymphoedema and hydrocele. The mHealth tool 'MeasureSMS-Morbidity' allows health workers in endemic areas to use their own mobile phones to send clinical information in a simple format using short message service (SMS). The experience gained through programmatic use of the tool in five endemic countries across a diversity of settings in Africa and Asia is used here to present implementation scenarios that are suitable for adapting the tool for use in a range of different programmatic, endemic, demographic and health system settings. METHODS: A checklist of five key factors and sub-questions was used to determine and define specific community-based field implementation scenarios for using the MeasureSMS-Morbidity tool in a range of settings. These factors included: (I) tool feasibility (acceptability; community access and ownership); (II) LF endemicity (high; low prevalence); (III) population demography (urban; rural); (IV) health system structure (human resources; community access); and (V) integration with other diseases (co-endemicity). RESULTS: Based on experiences in Bangladesh, Ethiopia, Malawi, Nepal and Tanzania, four implementation scenarios were identified as suitable for using the MeasureSMS-Morbidity tool for searching and reporting LF clinical case data across a range of programmatic, endemic, demographic and health system settings. These include: (I) urban, high endemic setting with two-tier reporting; (II) rural, high endemic setting with one-tier reporting; (III) rural, high endemic setting with two-tier reporting; and (IV) low-endemic, urban and rural setting with one-tier reporting. CONCLUSIONS: A decision-making framework built from the key factors and questions, and the resulting four implementation scenarios is proposed as a means of using the MeasureSMS-Morbidity tool. This framework will help national LF programmes consider appropriate methods to implement a survey using this tool to improve estimates of the clinical burden of LF. Obtaining LF case estimates is a vital step towards the elimination of LF as a public health problem in endemic countries

How do Healthcare Workers 'Do' Guidelines? Exploring How Policy Decisions Impacted UK Healthcare Workers During the First Phase of the COVID-19 Pandemic

We describe how COVID-19-related policy decisions and guidelines impacted healthcare workers (HCWs) during the UK’s first COVID-19 pandemic phase. Guidelines in healthcare aim to streamline processes, improve quality and manage risk. However, we argue that during this time the guidelines we studied often fell short of these goals in practice. We analysed 74 remote interviews with 14 UK HCWs over 6 months (February–August 2020). Reframing guidelines through Mol’s lens of ‘enactment’, we reveal embodied, relational and material impacts that some guidelines had for HCWs. Beyond guideline ‘adherence’, we show that enacting guidelines is an ongoing, complex process of negotiating and balancing multilevel tensions. Overall, guidelines: (1) were inconsistently communicated; (2) did not sufficiently accommodate contextual considerations; and (3) were at times in tension with HCWs’ values. Healthcare policymakers should produce more agile, acceptable guidelines that frontline HCWs can enact in ways which make sense and are effective in their contexts

Effect of an Enhanced Self-Care Protocol on Lymphedema Status among People affected by Moderate to Severe Lower-Limb Lymphedema in Bangladesh, a Cluster Randomized Controlled Trial

Background: Lymphatic filariasis (LF) is a major cause of lymphedema, affecting over 16 million people globally. A daily, hygiene-centered self-care protocol is recommended and effective in reducing acute attacks caused by secondary infections. It may also reverse lymphedema status in early stages, but less so as lymphedema advances. Lymphatic stimulating activities such as self-massage and deep-breathing have proven beneficial for cancer-related lymphedema, but have not been tested in LF-settings. Therefore, an enhanced self-care protocol was trialed among people affected by moderate to severe LF-related lymphedema in northern Bangladesh. Methods: Cluster randomization was used to allocate participants to either standard- or enhanced-self-care groups. Lymphedema status was determined by lymphedema stage, mid-calf circumference, and mid-calf tissue compressibility. Results: There were 71 patients in each group and at 24 weeks, both groups had experienced significant improvement in lymphedema status and reduction in acute attacks. There was a significant and clinically relevant between-group difference in mid-calf tissue compressibility with the biggest change observed on legs affected by severe lymphedema in the enhanced self-care group (∆ 21.5%, −0.68 (−0.91, −0.45), p < 0.001). Conclusion: This study offers the first evidence for including lymphatic stimulating activities in recommended self-care for people affected by moderate and severe LF-related lymphedem

Addition of Lymphatic Stimulating Self-Care Practices Reduces Acute Attacks among People Affected by Moderate and Severe Lower-Limb Lymphedema in Ethiopia, a Cluster Randomized Controlled Trial

Lymphedema causes disability and exacerbates poverty in many countries. The management of lymphatic filariasis (LF) and podoconiosis-related lymphedema involves daily hygiene to reduce secondary infections, but self-massage and deep-breathing, which have proven beneficial in cancer-related lymphedema, are not included. A cluster randomized trial in northern Ethiopia investigated the effects of lymphatic stimulation for people affected by moderate to severe lymphedema. Participants were allocated to either standard (control n = 59) or enhanced (intervention n = 67) self-care groups. Primary outcomes were lymphedema stage, mid-calf circumference, and tissue compressibility. Secondary outcomes were the frequency and duration of acute attacks. After 24 weeks, fewer patients were assessed as severe (control -37.8%, intervention -42.4%, p = 0.15) and there were clinically relevant changes in mid-calf tissue compressibility but not circumference. There was a significant between-group difference in patients who reported any acute attacks over the study period (control n = 22 (38%), intervention n = 7 (12%), p = 0.014). Daily lymphedema self-care resulted in meaningful benefits for all participants with a greater reduction in acute episodes among people performing lymphatic stimulation. Observations of a change in lymphedema status support earlier findings in Bangladesh and extend the demonstrated benefits of enhanced self-care to people affected by podoconiosis

Insights on Lymphedema Self-Care Knowledge and Practice in Filariasis and Podoconiosis-Endemic Communities in Bangladesh and Ethiopia

Lymphedema is a life-long sequelae to several neglected tropical diseases (NTD). In Bangladesh the main cause is lymphatic filariasis (LF) and Ethiopia is endemic for both LF and podoconiosis. The World Health Organization (WHO) recommends daily self-care including meticulous washing and drying of affected skin and attention to entry lesions, limb exercises and elevation. Adherence to this regime reduces secondary infections which cause disabling episodes of acute dermato-lymphangitis (ADL). Self-care practices must be integrated into family life, supported by community and monitored by health staff; however, little is known about the influence of personal and socio-demographic factors on adherence. People affected by lymphedema (n=272), adult caregivers (n=272), and health workers (n=68) in Bangladesh and Ethiopia were trained in lymphedema management according to WHO recommendations. Surveys on the causes and management of lymphedema were collected at baseline and 24-weeks, and patients completed a daily journal of self-care activities and symptoms. At baseline knowledge on causes and management of lymphedema was greater among health workers (&amp;gt;70%) than patients and caregivers (&amp;lt;20%) in both countries, and there were significant between-country differences in patient reported use of limb washing (Bangladesh = 7.7%. Ethiopia = 51.1%, p = 0.001). At 24-weeks knowledge on lymphedema causes and management had increased significantly among patients and caregivers, there was &amp;lt;70% adherence to limb washing and exercises, but lesser use of limb elevation in both countries. A range of patient characteristics were associated with significant variation in self-care, except for limb washing. Performance of fewer leg exercises was significantly associated with increased age or severe lymphedema in Bangladesh, and with being female or in paid work in Ethiopia. Patient journals recorded ADL symptoms and working days lost due to lymphedema more frequently than were reported by recall during the 24-week survey. Core elements of lymphedema self-care education, training and monitoring are the same for multiple etiologies. This creates opportunities for cross-cutting implementation of integrated service delivery across several skin NTDs. Sustainability will depend on community level ownership and research on factors affecting adherence to lymphedema self-care are urgently needed.</jats:p

Disease‐scape of the new millennium: a review of global health advocacy and its application

The global disease scape is constantly shifting, influenced by demographic transitions, altering the balance of the burden of infectious and non‐communicable diseases. The epidemiological transitions can be divided into three stages: the first, an increase in infectious disease burden as populations settled, then grew into towns and cities providing conditions for infectious agents to maintain spread; the second transition follows industrialisation, changes in lifestyle, diet and improved sanitation whereby infectious diseases are reduced and non‐communicable disease (NCD) prevalence increases; the third transition describes the re‐emergence of infectious diseases as the AIDS epidemic and other emerging and re‐emerging disease outbreaks lead to an increasing burden of infectious diseases, particularly in developing countries. Analysis of the disease‐scape has been carried out using WHO Global Burden of Disease data and correlation to demographic factors calculated using World Bank Development Indicators. The balance of chronic NCDs and infectious diseases can be represented numerically as the unit rate of infectious to non‐communicable diseases. The rate, which indicates at which end the continuum lies can then be correlated to these demographic development indicators to assess the factors which are influential to the continuum. As the balance of infectious and non‐communicable diseases around the world alters, the focus of the advocacy at the global health level has been examined to assess if the trends follow that of the shifting continuum. This has been carried out through an assessment of the WHO World Health Assembly (WHA) resolutions adopted annually between 1948 and 2013 on the subject of infectious and/or non-communicable diseases. The principle of International health stemmed from the need to contain the international spread of communicable diseases, so it is not surprising that in the first decade of the WHO, 88% of the resolutions adopted for infectious and non‐communicable disease were adopted for infectious diseases. In the latest ten years of the WHO, 72% of the Assembly resolutions for infectious and non‐communicable diseases were focused on infectious diseases; this indicates that while there has been a shift in the balance, the adopted resolutions still focus heavily on infectious diseases. An example of how advocacy can elevate diseases to a higher position on the global health agenda is that of the Neglected Tropical Diseases. Following the Millennium Development Goals, this group of seventeen diseases has been highlighted as being “neglected” in terms of funding, research and political will. A review of the campaign to highlight this shows how global health advocacy can elevate diseases to a prominent position on the global health agenda. With this in mind, the advocacy for a sub‐group of Neglected Zoonotic Diseases has been examined at the WHA level. The results highlight the sporadic nature of support to control these diseases, and that activism for control of some of the major zoonotic diseases remains lacking. Rabies is explored as an example of a disease for which there are recommendations and support at the global level for the control and elimination of the disease, but for which barriers to control exist locally in endemic countries. The advocacy for diseases at the global health level has the possibility to impact the priorities of health care within individual nations. However the advocacy at this level may take time to reflect the changes within the disease‐scape. The impact of such advocacy is also limited by local political will, availability of resources and local cultural implications. Therefore there is a need to ensure that efforts to control diseases are tailored to specific populations and that resources are made available to support the advocacy

An Enhanced Self-Care Protocol for People Affected by Moderate to Severe Lymphedema.

Lymphedema is a chronic skin disease that has many causes and leads to significant disfigurement and disability worldwide. Recommendations for lymphedema self-care vary by setting and the World Health Organization guidelines for people affected by lymphatic filariasis- and podoconiosis-related lymphedema are centered around a basic daily hygiene regimen. Research on cancer-related lymphedema in developed country settings suggests that deep-breathing exercises and self-massage can improve lymphedema status, but these exercises are not routinely taught to people affected by lymphedema in developing country settings. To determine if the activities proven in cancer-related lymphedema can improve outcomes for people affected by lymphatic filariasis- or podoconiosis-related lymphedema, an enhanced self-care protocol for lower limb lymphedema was developed and trialed in Nilphamari District in Bangladesh and Simada Woreda in Ethiopia. Enhanced self-care activities were chosen on the basis that they would not add financial burden to patients or their families and included recommendations to perform deep-breathing exercises and self-massage, drink clean water, and eat fresh fruits and vegetables. The enhanced-care protocol was developed in collaboration with implementing partners in both countries and may be applicable in other populations affected by lower-limb lymphedema. Trial methods and results will be submitted for peer reviewed publication. Current recommendations for lymphedema self-care may be less effective for people with more advanced disease and new or cross-cutting methods are needed to improve outcomes for these populations

How did UK policymaking in the COVID-19 response use science? Evidence from scientific advisers

Background Responses to COVID-19 have invested heavily in science. How this science was used is therefore important. Our work extends existing knowledge on the use of science in the pandemic by capturing scientific advisers’ experiences in real time. Aims and objectives Our aim was to present generalisable messages on key qualifications or difficulties involved in speaking of ‘following the science’. Methods Ninety-three interviews with UK scientific advisors and government officials captured their activities and perceptions during the pandemic in real time. We also examined Parliamentary Select Committee transcripts and government documents. This material was analysed for thematic content. Findings and discussion (1) Many scientists sought guidance from policymakers about their goals, yet the COVID-19 response demonstrated the absence of a clear steer, and a tendency to change course quickly; (2) many scientists did not want to offer policy advice, but rather to provide evidence; and (3) a range of knowledge informed the UK’s pandemic response: we examine which kinds were privileged, and demonstrate the absence of clarity on how government synthesised the different forms of evidence being used. Conclusions Understanding the reasons for a lack of clarity about policy goals would help us better understand the use of science in policy. Realisation that policy goals sometimes alter rapidly would help us better understand the logistics of scientific advice. Many scientists want their evidence to inform policy rather than determine the options selected. Since the process by which evidence leads to decisions is obscure, policy cannot be said to be evidence-based. </jats:sec