Lymphatic filariasis (LF) and leprosy are disabling infectious diseases endemic in Nepal. LF infection can lead to lymphoedema and hydrocoele, while secondary effects of leprosy infection include impairments to hands, eyes and feet. The disabling effects of both conditions can be managed through self-care and the supportive effects of self-help groups (SHGs). A network of SHGs exists for people affected by leprosy in four districts in Nepal’s Central Development Region, however no such service exists for people affected by LF. The aim of this study was to determine the feasibility of integrating LF affected people into existing leprosy SHGs in this area. A survey was conducted using a semi-structured questionnaire to elicit information on: (i) participant characteristics, clinical manifestation and disease burden; (ii) participants’ knowledge of management of their condition and access to services; and (iii) participants’ knowledge and perceptions of the alternate condition (LF affected participants’ knowledge of leprosy and vice versa) and attitudes towards integration. A total of 52 LF affected and 53 leprosy affected participants were interviewed from 14 SHGs. On average, leprosy affected participants were shown to have 1.8 times greater knowledge of self-care techniques, and practiced 2.5 times more frequently than LF affected participants. Only a quarter of LF affected participants had accessed a health service for their condition, compared with 94.3% of leprosy affected people accessing a service (including SHGs), at least once a week. High levels of stigma were perceived by both groups towards the alternate condition, however, the majority of LF (79%) and leprosy (94.3%) affected participants stated that they would consider attending an integrated SHG. LF affected participants need to increase their knowledge of self-care and access to health services. Despite stigma being a potential barrier, attitudes towards integration were positive, suggesting that the SHGs may be a good platform for LF affected people to start self-care in this area. This is not a registered trial.

Background: As new lymphatic filariasis infections are eliminated through mass chemotherapy, previously affected individuals are left with the sequellae, especially chronic progressive lymphoedema. Currently this is managed by careful attention to limb hygiene to prevent infection. Studies over the past 15 years have suggested that the incorporation of doxycycline treatment may arrest or even reverse progression of lymphoedema. Most of this work has been observational or based on small studies, and if this intervention is effective, studies need to be conducted on a larger scale and under diverse geographical and social conditions before it can be incorporated into treatment policy. Methods/Design: The double-blind, placebo-controlled study was designed to investigate the impact of six weeks treatment with doxycycline added to standard limb hygiene on early stage filarial lymphoedema in five sites in Africa and the Indian subcontinent. One site in Cameroon is selected for studying lymphoedema in podoconiosis. Each site was individually powered with the potential to undertake a meta-analysis on completion. Evaluation methods followed those used in Ghana in 2012 with additions resulting from advances in technology. The details of the core protocol and how it was varied to take account of differing situations at each of the sites are provided. The study will enrol up to 1800 patients and will complete in mid-2021. Conclusions: This paper provides details of what challenges were faced during its development and discusses the issues and how they were resolved. In particular, the reasons for inclusion of new technology and the problems encountered with the supply of drugs for the studies are described in detail. By making these details available, it is hoped that the study protocol will help others interested in improving treatment for filarial lymphoedema in the design of future studies. Trial registration India: Clintrials.gov. NCT02929121 registered 10 Oct 2016: https://clinicaltrials.gov/ct2/show/NCT02929121 Mali: Clintrials.gov. NCT02927496 registered 7 Oct 2016: https://clinicaltrials.gov/ct2/show/NCT0292749 Sri Lanka: Clintrials.gov. NCT02929134 registered 10 Oct 2016: https://clinicaltrials.gov/ct2/show/NCT02929134 Ghana: ISRCTN. 14042737 registered 10 July 2017: 10.1186/ISRCTN14042737 Tanzania: ISRCTN. 65756724 registered 21 July 2017: 10.1186/ISRCTN65756724 Cameroon: ISRCTN. 1181662 registered 25 July 2017: 10.1186/ISRCTN11881662

Lymphatic filariasis (LF) is one of the primary causes of lymphoedema in sub-Saharan Africa, and has a significant impact on the quality of life (QoL) of those affected. In this paper we assess the relative impact of lymphoedema on mobility and income in Chikwawa district, Malawi. A random sample of 31 people with lymphoedema and 31 matched controls completed a QoL questionnaire from which both an overall and a mobility-specific score were calculated. Two mobility tests were undertaken, namely the 10 m walking test [10MWT] and timed up and go [TUG] test, and a subset of 10 cases-control pairs wore GPS data loggers for 3 weeks to measure their mobility in a more natural setting. Retrospective economic data was collected from all 31 case-control pairs, and each participant undertaking the GPS activity recorded daily earnings and health expenditure throughout the observation period. Cases had a significantly poorer overall QoL (cases = 32.2, controls = 6.0, P < 0.01) and mobility-specific (cases = 43.1, controls = 7.4, P < 0.01) scores in comparison to controls. Cases were also significantly slower (P < 0.01) at completing the timed mobility tests, e.g. mean 10MWT speed of 0.83 m/s in comparison to 1.10 m/s for controls. An inconsistent relationship was observed between mobility-specific QoL scores and the timed test results for cases (10MWT correlation = −0.06, 95% CI = (−0.41, 0.30)), indicating that their perceived disability differed from their measured disability, whereas the results were consistent for controls (10MWT correlation = −0.61, 95% CI = (−0.79, −0.34)). GPS summaries indicated that cases generally walk shorter distances at slower speeds than control, covering a smaller geographical area (median area by kernel smoothing: cases = 1.25 km2, controls = 2.10 km2, P = 0.16). Cases reported earning less than half that earned by controls per week (cases = $0.70, controls = $1.86, P = 0.064), with a smaller proportion of their earnings (16% vs 22%, P = 0.461) being spent on healthcare. Those affected by lymphoedema are at a clear disadvantage to their unaffected peers, experiencing a lower QoL as confirmed by both subjective and objective mobility measures, and lower income. This study also indicates that objective measures of mobility may be a useful supplement to self-assessed QoL questionnaires when assessing the future impact of lymphoedema management interventions.

Clinical lymphatic filariasis (LF) is a debilitating, disfiguring medical condition with severe psychosocial consequences for patients and their families. Addressing these patients’ medical needs is a major component of the global programme to eliminate lymphatic filariasis (GPELF). In the 20 y of providing a minimal package of care many thousands of surgical operations to correct LF hydrocoeles been performed and national programmes in >90% of LF endemic countries have received the training needed to care for their patients. The creation of educational materials detailing appropriate patient care, together with increased funding, have been key catalysts in increasing awareness of clinical LF in recent years. Nevertheless, the implementation of care for these patients has often faced challenges that have led to delays in fully implementing the patient care component of GPELF; these include locating these often stigmatised individuals, maintaining provision of the necessary consumables (e.g. soaps and creams) and maintaining programme support within already overstretched national LF teams. As the LF global programme moves to achieve success by 2030 it will be vital to continue to focus efforts on the care and rehabilitation of those suffering from lymphoedema and hydrocoeles, learning from the experiences of the past 20 y.

Lymphatic filariasis (LF) is a mosquito-borne parasitic infection that causes significant disabling and disfiguring clinical manifestations. Hydrocoele (scrotal swelling) is the most common clinical condition, which affects an estimated 25 million men globally. The recommended strategy is surgical intervention, yet little is known about the impact of hydrocoele on men’s lives, and how it may change if they have access to surgery. We prospectively recruited and followed-up men who underwent surgery for hydrocoele at six hospitals in an LF endemic area of Malawi in December 2015. Men were interviewed at hospitals pre-surgery and followed-up at 3-months and 6-months post-surgery. Data on demographic characteristics, clinical condition, barriers to surgery, post-surgery symptoms/complications and quality of life indicators were collected and analysed pre- and post-surgery, by age group and stage of disease (mild/moderate vs. severe), using chi-square tests and student’s t test (paired). 201 men were interviewed pre-surgery, 152 at 3-months and 137 at 6-months post-surgery. Most men had unilateral hydrocoeles (65.2%), mild/moderate stages (57.7%) with an average duration of 11.4 years. The most reported cause of hydrocoele was it being sexually transmitted (22.4%), and the main barrier to surgery was the cost (36.3%). Pre-surgery, a significant difference in the scrotum side affected was found by age group (X² = 5.978, p = 0.05), and men with severe stage hydrocoele reported more problems with their quality of life those with mild/moderate stage (t = 2.793; p = 0.0006). Post-surgery, around half of the men reported some pain/discomfort (55.9%), swelling (8.6%), bleeding (3.3%) and infection (5.9%), most of which had resolved at 3-months when the most significant improvements in their quality of life were found (t = 21.3902; p = 0.000). Post-surgery at 6 months all men reported no physical, social, psychological problems and took no time off work. Surgery had a significant positive impact on many aspects of a patient’s life, and the expansion of this treatment to all those affected in LF endemic areas would greatly improve the quality of men’s and their families’ lives, and greatly contribute to the global goal of providing universal health care. Lymphatic filariasis is a mosquito-borne infection that causes significant disabling and disfiguring clinical conditions. Hydrocoele (scrotal swelling) is the most common condition affecting an estimated 25 million men worldwide. Surgery is the main intervention, however, there is limited information on its impact. This study assessed men before and after surgery in an endemic region of Malawi, to identify potential barriers and determine the how surgery may change the quality of their life. Before surgery, 201 men reported to have moderate to severe problems with many aspects of their life including pain, mobility, usual activities, self-care, social issues, psychological health and ability to work. The main barrier to hydrocoele surgery was the cost, including associated transport and accommodation costs. After surgery, follow-up surveys at 3-months and 6- months found that men reported minimal or no physical, social, psychological problems and took no time off work. Surgery had a significant positive and lasting impact on men’s lives. National programmes need to advocate for resources to increase funding to support men and the uptake and demand for quality surgical services.

To achieve the elimination of onchocerciasis transmission in all African countries will entail enormous challenges, as has been highlighted by the active discussion around onchocerciasis intervention strategies and evaluation procedures in this journal. Serological thresholds for onchocerciasis elimination, adapted for the African setting, need to be established. The Onchocerciasis Technical Advisory Subgroup of the World Health Organization is currently developing improved guidelines to allow country elimination committees to make evidence-based decisions. Importantly, onchocerciasis-related morbidity should not be forgotten when debating elimination prospects. A morbidity management and disease prevention (MMDP) strategy similar to that for lymphatic filariasis will need to be developed. This will require collaboration between the onchocerciasis elimination program, the community and other partners including primary health and mental health programs. In order to reach the goal of onchocerciasis elimination in most African countries by 2025, we should prioritize community participation and advocate for tailored interventions which are scientifically proven to be effective, but currently considered to be too expensive.