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The Leprosy Mission's Presentations at ILC 2022

Transmission

Rashmi Nayak, Dr. Archana Kumar , Karthikeyan G , Joydeepa Darlong

Background:

Migration is one of the social determinants influencing transmission dynamics of Neglected Tropical Diseases (NTDs) and leprosy is no exception. In India, leprosy is concentrated in high-risk clusters and internal migration is common. The reasons for migration are primarily socioeconomic and may influence leprosy transmission and hamper control efforts.

As strategies of disease control become increasingly important to meet World Health Organization (WHO) standards, a more thorough approach is needed to investigate migration as a risk factor for disease

Research Question: Is migration a risk factor for Leprosy transmission

Methodology

Study Design: A cross-sectional study was conducted among all the new cases of leprosy registered for treatment at the study Centre.

Data collection: Data was collected on demography. Disease status, family, social, and personal history from the medical records in the hospital management system.

Result: Till date, 52 newly diagnosed leprosy patients were interviewed and the data collection is ongoing. The preliminary findings are; In general people who had history of migration (n=19) had severe form of disease as compared to non-migratory population (n=33). Number of patients with one or more nerve involved (58% vs 51%), BI 3 and above (68% vs 42%) and WHO disability grade 1 or 2 (57% vs 45%). The detailed findings will be presented at the conference.

Limitations: Data is from the tertiary hospital and may not be representative of people affected by leprosy in the study area.

Conclusion

Migration results in delayed diagnosis, severe form disease and complications thus resulting in a risk factor for transmission. This should be investigated more thoroughly and matched with the provision of health services within the national program

Ravindra P Turankar1, Vikram Singh2, Mallika Lavania2, Itu Singh1, Utpal Sengupta1 and Rupendra S Jadhav3*

Affiliation:

  1. Stanley Browne Laboratory, TLM Community Hospital, Nand Nagari Delhi-110093
  2. National Institute of Virology, Pune, India
  3. Department of Microbiology, The Institute of Science, Mumbai, India

Introduction

Molecular epidemiology of leprosy is very important to study leprosy transmission dynamics and to enhance our understanding of leprosy in endemic areas by utilising the molecular typing method. Now a days our understanding of leprosy transmission dynamics has been refined by SNP typing and VNTR marker analysis of M. leprae strains.

Objective

This study was carried out to find out the presence of viable M. leprae in the environment of leprosy patients, understanding their genotypes and compared with that of M. leprae present in patients.

Patients / material and methods

Slit-skin smear (SSS) samples(112nos) were collected from the active multibacillary leprosy patients from different blocks of leprosy endemic area. Soil samples (1060nos) and water samples (620nos) were collected from residing areas of leprosy patients. SNP typing and subtyping were performed by PCR sequencing method. Multiplex PCR was performed using fifteen ML-VNTR loci and results were analysed.

Results

We observed high PCR positivity in soil samples (344 out of 1060; 32%) and water samples (140 out of 620; 23%). These PCR positive samples when further screened for viability, it was observed that 150 soil samples (44%) and 56 water samples (40%) showed presence of 16S rRNA. SNP typing of M. leprae revealed presence of predominantly type 1. SNP subtype 1D (83%) was most prevalent in all the blocks of Purulia followed by subtype 1C (15%) and subtype 1A (2%). SNP subtype 2F was noted in only one sample. SNP and VNTR combination showed presence of similar strain type in certain pockets of Purulia region which was responsible for transmission.

Limitations

More number of samples need to be tested for accurate and more precise strain differentiation in the clinical samples.

Conclusion

Presence of viable M. leprae in the environment, and presence of SNP Type 1 M. leprae in patients and environment suggests both environment and patients play a role in disease transmission.

R.P. Turankar1, V. Singh3, R, Sharma1, I. Singh1, V. K. Pathak1, Mod Nadeem1 Mallika Lavania3, Jalaz Rahami2, and U. Sengupta1.

  1. Stanley Browne Laboratory, The Leprosy Mission Trust India, Delhi
  2. The Leprosy Mission Home & Hospital, Purulia, West Bengal, India.
  3. National Institute of Virology, Pune, India

Introduction

Rifampicin is the key component of the MDT regimen, having bactericidal activity against Mycobacterium (M) leprae. It was always mentioned that one dose Rifampicin in MDT makes a patient negative for acid fast bacilli (AFB) in the nose. However, one is unable to get any scientific evidence for the same from the literature.

Objectives

The aim of the present study was to find out the presence of viable M. leprae in the nose of leprosy patients after one dose of MDT by using AFB staining and RT-PCR of 16S rRNA, esxA gene targets.

Materials & Methods

A total of 275 nasal swab specimens were collected from paucibacillary (PB; n=124) and multibacillary (MB; n=137) leprosy patients from different hospitals. After extraction of DNA and RNA samples were subjected to viability assessment by Real Time-PCR. Genotyping of M. leprae were performed in MB patients.

Results

After one month of MDT, Real time PCR showed positivity in the nasal swab of only one PB patient. On the other hand, MB patients showed 34% of viable M. leprae in their nose after one dose of MDT. After 6 month of MDT 19% of patients showed presence of viable bacilli by qRT-PCR. All specimens showed presence of 1D SNP subtype of M. leprae strain.

Conclusion

Real time PCR showed presence of viable M. leprae after one month of MDT in nasal swabs of >30% of MB patients. Genotyping analysis showed presence of 1D SNP type of M. leprae in all samples.

Mohd Nadeem, Vinay Kumar Pathak, Itu Singh, RP Turankar, Madhvi Ahuja, Rahul Sharma, U. Sengupta

Introduction

Leprosy is a chronic infectious disease caused by Mycobacterium leprae. Diagnosis of leprosy is mainly based on clinical signs and symptoms. Household contacts (HHCs) of leprosy patients have a higher risk of contracting leprosy in endemic areas of leprosy. Early diagnosis and treatment of leprosy is the most effective way to break the chain of transmission of the disease. Multiplex PCR (MPCR) is a more efficient detection tool that utilises more than one gene specific to M.leprae.

Objective

The present study was aimed to detect M.leprae DNA in nasal swabs in HHCs of paucibacillary (PB) and multibacillary (MB) patients by using MPCR.

Material and Method

HHCs (n = 90) of leprosy patients were recruited out of which nasal swab samples of HHCs of PB patients (n = 32) and HHCs of MB patients (n = 58) were collected from different hospitals of Leprosy Mission. The bacterial indexes (BI) of PB patients were negative while BI of MB patients ranged from 3+ to 6+. DNA was extracted from all samples using lysis method. MPCR was done utilising three gene targets RLEP, 16SrRNA and sodA specific for M.leprae. The amplified products were analysed by electrophoresis on 4% agarose gel.

Results

It was observed that 34.37% (11/ 32) household contacts of PB patients were positive for M.leprae DNA by MPCR. Similarly in household contacts of MB patients, 51.72% (30/ 58) were positive by MPCR.

Limitation

Sample size is low.

Conclusion

Household contacts of leprosy patients are the risk population that has to be screened for early detection of the disease. Multiplex PCR appears to be an efficient tool which can be used for surveillance of HHCs.

Anouk van Hooij, Susan J.F. van den Eeden, Marufa Khatun, Santosh Soren, Kees L.M.C. Franken, Johan Chandra Roy, Khorshed Alam, Abu Sufian Chowdhury, Jan Hendrik Richardus, Annemieke Geluk

Introduction

Detection of asymptomatically M. leprae infected individuals, allowing informed decision making on who needs treatment at a preclinical stage, is vital to interrupt transmission and can help prevent leprosy. In previous trials (MALTALEP & IDEAL), we assessed blood-derived host immune-profiles specific for M. leprae infection or leprosy disease by merging detection of innate, adaptive cellular as well as humoral immunity.

This has led to the identification of selected host-immune markers, which will now be applied in a recently developed, low complexity lateral flow assay, providing a convenient tool to assess M. leprae infection, allowing assessment of efficacy of prophylactic interventions in a point-of-care setting and monitoring treatment.

Results

The preliminary data described below do not include all timepoints for each recruited individual yet, which may influence the results.

Significance was determined using Mann-Whitney U tests (patients vs. contacts) or a repeated-measures ANOVA.

Antibodies:

  • Seropositivity for αPGL-I IgM antibodies at intake (before treatment) assessed by UCP-LFA in FSB is significantly higher in patients vs. contacts: 90% vs. 12%; absolute numbers: 27/30 patients vs 32/260 contacts.
  • The levels of αPGL-I IgM antibodies in leprosy patients were significantly higher compared to those levels detected in contacts by UCP-LFA (p< 0.0001)

Cytokines and acute phase proteins:

  • Patients with BI 4-6 tend to have higher levels of S100A12, CRP and SAA.
  • MDT significantly decreases the levels of anti-PGL-I IgM.
  • MDT significantly increases ApoA1 levels in leprosy patients.
  • During the six month follow-up after SD(D)R, the levels of ApoA1 increased in household contacts and the CRP level decreased.
  • S100A12 levels were increased four weeks after intake but returned to baseline values at the six months follow-up timepoint.

Introduction

The efficacy of SDR-PEP is highest (~60%) among neighbours and social contacts and much lower (24%) among household contacts and blood relatives. Among household contacts, a higher proportion of contacts already has a stage of leprosy infection that can no longer be treated with a single dose of rifampicin (SDR-PEP). A more powerful preventive regimen is therefore needed that can cure subclinical leprosy in contacts with a higher bacterial load. The PEP++ study aims to interrupt the transmission of M. leprae in the project interventions areas, which eventually will lead to zero new cases of leprosy in these areas.

The study will use a cluster-randomised controlled trial design and an enhanced package of leprosy control measures in both intervention and control areas. In the intervention areas, all close contacts of leprosy patients will receive the PEP++ regimen (Rifampicin + Clarithromycin regimen with 3 repeated doses at 4-weekly intervals). In the control areas, all eligible contacts will receive SDR-PEP.

A total eligible sample of approximately 3150 Index cases with their 202,000 close contacts in the two districts of Bangladesh.

Results

The expected results of the PEP++ study are the reduction in the total number of new leprosy patients and new case detection rates (90% reduction in NCDR with a 50% population intervene) in the intervention areas. A lower proportion of children cases among new leprosy patients. The proportion of contacts accepting to take the PEP++ medications after having received information and the proportion of those who took all three doses. The PEP++ intervention package is more cost-effective compared to SDR-PEP in preventing one case of leprosy.

Authors: Abu Sufian Chowdhury, Khorshed Alam, Johan Chondra Roy, Sohel Marndi, Rashidul Hasan, Babu Ram Roy, Mijanur Rahman, Mohammad Alauddin.

Rural Health Program, The Leprosy Mission International-Bangladesh

Introduction: Integration of the leprosy control services into general health services in Bangladesh was introduced as a national policy in 1993 to eliminate leprosy. This study aimed to quantify the government health staff participation in leprosy control activities 25 years after planned integration into the general health care system.

Methods: This was a follow-up of a prospective cross-sectional observational study. The study was conducted in eight Upazila Health Complex (UHC) Leprosy Clinics in the Rangpur district. The baseline data was created from July to December 2018 and the follow-up after 3 years from July to December 2021. The sources of data were the suspect registers, patient’s leprosy cards, monthly and quarterly reporting files and interviews of new suspects in the leprosy clinic. Descriptive statistics had been used for analyzing the data.

Results: In total, 1041 suspects from leprosy suspect registers, 146 patients’ leprosy cards and 38 leprosy online reporting files and 254 interviews of new suspects were reviewed. The result showed 97.0% of general information of the patient in the Patient’s Leprosy Card filled by the government staff in 2018 whereas, in 2021 it decreased to 74%. For medical details, it decreased by 18.9%, physical examination by 11.6%, nerve examination by 31.5% and disability examination by 10.5%. On the other hand, the sensory test of the hand and feet increased by 6.3% and management after completion of MDT by 6.8%. The DHIS-2 online leprosy reporting was 66.7% in 2018 and 78.9% in 2021. The leprosy report presentation at UHC monthly meeting was 40% in 2018 and 78.9% in 2021. Voluntary suspect reporting increased by 24.2%.

Conclusion: The Government staff’s engagement in visible disability diagnosis and management after MDT completion is increased. However, their engagement in the Slit Skin Smear (SSS) test and prevention of disability (POD) services is still lagging. The COVID-19 restrictions did affect participation in all the activities. The government infrastructure can support SSS tests at UHC laboratories and train staff on POD management.

Subhojit Goswami

Introduction: Socio-economic risk markers for leprosy—poverty, food insecurity, crowded living conditions, lack of proper sanitary conditions—need to be seen in the context of climate change, which threatens to push more people into poverty, elevate risk of frequent pandemics, and disrupt health systems. Worryingly, most of the endemic states (Bihar, Chhattisgarh, Odisha) are highly vulnerable to climate change, more so because the existing health systems are not resilient to address competing health priorities. COVID-19 is an example. In the given situation, India is wedged between two pressing needs: addressing social determinants of health and strengthening and integrating health systems to serve people affected by leprosy effectively.

Objective: The WHO Global Leprosy Strategy 2021-2030 considers ‘zero infection and disease’ as one of the long-term goals, for which barriers have been identified largely through the lens of clinical and service delivery aspects. Another dimension that is not explored much is the layered challenges that climate change poses before us. The findings of the study, which will draw from stakeholders from diverse disciplines, will feed into the national and sub-national strategies that organisations are developing to support the National Leprosy Eradication Program.

Methodology: During the study, the team will look through peer-reviewed research papers, government reports, reports from health and policy think tanks, and media reports. They will also have one-on-one interviews (both offline and online) with doctors, researchers, leprosy-focused organisations (to understand their interventions) and duty bearers in different tiers of governance.

Conclusion: With reports flagging concerns over climate anomalies reversing the gains in health systems, this study will help in building systems and policies that are resilient, inclusive, and effective in achieving zero leprosy.

Introduction: Leprosy is a chronic infectious disease caused by Mycobacterium leprae, representing a public health issue in some countries. The child proportion among newly detected cases of leprosy is a strong indicator of continued transmission of the disease and one of the main targets of the current World Health Organization strategy. Peripheral nerve involvement, which increases the chance of deformities, a serious problem, especially if one considers the age of these patients.

Objective: To describe the profile of all child cases of leprosy with disability and the outcome of the disease.

Method and material-

Data was collected from Medical Records Department from period of 2017-2022 of all children age up to 14yrs who came for leprosy treatment and analysed on various aspects of gender, BI, disability grade, reaction, Nerve function impairment and outcome of treatment.

Result: Out of 4838 new and partially treated cases who were started and continued with MDT 311 (6.4%) were child cases. Male and female ratio was 1.5:1. Grade 1 disability were 9 and2 disability were 22 . Type 1 Reactions and Neuritis were 32 and Type 2 reaction were only 2 and NFI were 21. Bacteriological index of 45 children were positive and 11 children had BI of 4+ or higher.

Among 31 children with disability,10 children completed MDT course, 1 was under treatment,4 were taken treatment from primary health care centre and defaulters were 16. Among RFT -7(70%) patients showed improvement and 3had no.1 child who was under treatment and 2 defaulted cases also showed improvement

Limitation: this was a retrospective study and data may not be as robust as prospective studies.

Conclusion: Finding positive cases among children is serious concern and needs immediate attention. Early diagnosis and treatment are essential to prevent disabilities and deformities, and reduce the physical, psychosocial, and economic burden of the disease. Screening of Family and surrounding area should be done to detect the hidden cases.

Dr Joydeepa Darlong

Introduction

Covid - 19 disease was declared as a pandemic by World Health Organization in March 2020. This led to a nationwide lock down to contain the disease. This resulted in the disruption of many regular health services, making management of diseases difficult. Leprosy is a public health problem in low- and middle-income countries and affected individuals need long-term follow-up. COVID 19 affected leprosy just as many other illnesses and its impact was multiplied because of several factors.

Impact of COVID on leprosy

The challenges faced by leprosy patients during the pandemic were listed under several points in their journey towards cure . These are : case detection , diagnosis of leprosy , prophylaxis, management of complications and compliance , access to POID and rehab services.

Vulnerable populations like children , people with disability, people who lived alone , youth with disabilities were specially challenged. The other challenges stemmed from operational issues like production and distribution of MDT , repurposing of all treatment centres to COVID care , social distancing regulations , livelihood and education issues and migration .

Overcoming challenges

The Govt of India , as a part of NLEP took some steps for screening some vulnerable populations.

IADVL and SIG came out with recommendations on the management of leprosy patients in context of the pandemic. Several other leprosy focussed NGOs like The Leprosy Mission implemented innovations like teleconsultation and mobile disability services for the community to mitigate these challenges.

Recommendations

Recommendations have been proposed addressing these challenges. Accompanied MDT, home delivery of drugs, telemedicine services, education, and counselling of leprosy patients on both covid-19 and leprosy are some of areas of preparedness. Essential leprosy services need to be maintained and improved access of services needs prioritization for all who are involved in service delivery.

References

  1. Rathod et al. Management of Leprosy in the Context of COVID-19 Pandemic: Recommendations by SIG Leprosy (IADVL Academy). Indian Dermatol Online J. 2020 May 10;11(3):345-348. doi: 10.4103/idoj.IDOJ_234_20. PMID: 32695691; PMCID: PMC7367564.
  2. Indira, D., et al. "Impact of Covid-19 Disease on Health Care Services of Leprosy Patients Attending a Tertiary Care Centre, Telangana." Indian J Lepr 94 (2022): 63-68.
  3. https://www.leprosy-information.org/resource/pandemic-and-peoples-plight-experiences-echoed-across-india
  4. https://www.leprosy-information.org/resource/leprosy-care-era-covid-19
  5. de Barros B et al. An assessment of the reported impact of the COVID-19 pandemic on leprosy services using an online survey of practitioners in leprosy referral centres. Trans R Soc Trop Med Hyg. 2021 Dec 2;115(12):1456-1461. doi: 10.1093/trstmh/trab084. PMID: 34077950; PMCID: PMC8195135.

Diniz, Denise Scofano, et al. "COVID-19 and Neglected Diseases in the face of inequalities in Brazil: a matter of sustainable development." Saúde em Debate 45 (2022): 43-55.

Dr Joydeepa Darlong

Introduction:

It is widely recognized that strong program management is essential to achieving better health outcomes. This priority is however challenged by operational factors that disrupt effective management at all steps in the patient’s journey from pre-clinical stage to rehabilitation. The National Leprosy Eradication Program is a centrally sponsored public health programme of the government of India. It has evolved over a period with remarkable changes from National leprosy Control Program to NLEP. There have been multiple successful milestones successfully implemented in the programme to reach the ultimate goal of leprosy free India. Despite clear guidelines, subnational operations are dependent and challenged by various factors. The Leprosy Mission Hospital at Purulia is one such example of subnational program management that had evolved to cater to the management of leprosy.

The Purulia model:

History and evolution:

The Leprosy Mission Hospital at Purulia, West Bengal, is well known for its endemicity for leprosy. It was established in 1888 as a leprosy asylum. Thereafter it had 5 leprosy control units along with the base hospital as a referral centre. India declared elimination of leprosy in 2005 and the program stopped being a vertical program. The leprosy control units were closed, and the program was handed over to the district authorities. The hospital’s functioning changed to a referral tertiary center. It also functions as a primary care hospital for specialties like medicine, dermatology, ophthalmology, orthopaedics and general disability.

Methodology: The model of health care adopted by the hospital is the holistic model. It provides diagnostic care for leprosy and its complications including relapse and resistance. Management of reactions and adverse drug reactions, prevention of disability and rehabilitation services including reconstructive surgery are available. Custom made footwear, orthosis, prothesis, aids and appliances are provided.

Continuous capacity building is undertaken through basic and advanced leprosy training programs and refresher courses. Research is an integral part of clinical practice and there are several papers published from evidence gathered at the field level. Best practices are collated as hospital protocols and regular chart audits by key staff themselves ensures that high quality care is availed by patients always. Patient satisfaction survey done annually helps in monitoring and improvement of services along with annual and mid-year reviews.

Conclusion: This holistic patient centred model of care goes a long way in ensuring that the patient has access to quality health care under one roof at all times.

Anouk van Hooij1, Marufa Khatun2, Santosh Soren2, Elisa Tjon Kon Fat3, Danielle de Jong3, Els M. Verhard1, Johan Chandra Roy2, Khorshed Alam2, Abu Sufian Chowdhury2, Jan Hendrik Richardus4, Paul Corstjens3 and Annemieke Geluk1

1 Department of Infectious Diseases, Leiden University Medical Center, Leiden, Netherlands,

2 Rural Health Program, The Leprosy Mission International Bangladesh, Dhaka, Bangladesh,

3 Department Cell and Chemical Biology, Leiden University Medical Center, Leiden, Netherlands,

4 Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands

Introduction: Mycobacterium leprae is still actively transmitted in endemic areas reflected by the fairly stable number of new leprosy cases detected each year. Recognizing the signs and symptoms of leprosy is challenging, especially at an early stage. Improved diagnostic tools, based on sensitive and specific biomarkers, that facilitate diagnosis of leprosy are therefore urgently needed. Since the manifestation of leprosy disease as multi- or paucibacillary is determined by host immunity, unravelling this response will facilitate the search for biomarkers.

Objective: To identify biomarkers for M. leprae infection and paucibacillary disease based on host immunity and incorporate these in lateral flow assays applicable to leprosy endemic areas.

Materials and methods: Using multiplex-bead-arrays, 60 host-proteins were measured in a cross-sectional approach in 24-h whole blood assays (WBAs) of leprosy patients, contacts and endemic controls (EC). Biomarkers validated by ELISA were incorporated in quantitative lateral flow assays using up-converting phosphor technology.

Results: A biomarker signature was identified that jointly allowed discrimination of patients with multi- and paucibacillary leprosy. These biomarkers were successfully incorporated in a lateral flow multi-biomarker test (MBT), which demonstrated feasibility of quantitative detection of these host proteins simultaneously. The biomarker signature proved to be applicable in both high and low leprosy endemic areas. Moreover, pilot testing of fingerstick blood showed similar MBT performance in point-of-care (POC) settings as observed for plasma and serum.

Limitations: MBT performance was assessed in relatively small cohorts from Asian countries. To ensure applicability in other parts of the world, the MBT is currently evaluated in South American leprosy endemic areas.

Conclusion: The newly developed prototype MBT measures multiple biomarkers covering immunity against M. leprae across the leprosy spectrum. The MBT can thereby provide the basis for immunodiagnostic POC tests for leprosy with potential for other (infectious) diseases as well.

Authors: Masuma Parvin, Jiptha Boiragee, Margaret Guyan, James Pender, Heather Saranne, Surendra Nath Singh

Introduction

Early leprosy case detection is essential to achieve all four WHO Global leprosy targets for 2030. However, only 39% of new cases found in 2019-2020 were female. This leaves women vulnerable to a “triple jeopardy” of discrimination due to gender, the stigma associated with leprosy and increased disability because of late diagnosis and treatment.

Description of the case/issue

Although the majority of new cases found globally are male, evidence is that both men and women are equally likely to contract the disease. As around 200,000 new cases of leprosy are diagnosed annually but only 39% of them female, it is suggested that each year over 40,000 new female cases of leprosy may be missed!

TLM programmes in Bangladesh and Nepal working to address the imbalance, found a majority of female cases, in three of its working areas in recent years ranging from 51% to 55% of new cases.

Programmatic efforts to achieve a greater gender parity in case finding have included:

  • Partnership with local organisations focused on empowering women
  • Ensuring gender balance within the team involved in case detection
  • Mass awareness campaigns tailored to ensure they reach women.
  • Training female community health volunteers
  • Carrying out contact tracing activities at times when women will be available
  • Empowering and screening women in self- help groups
  • Improving gender sensitive practises when screening
  • Extended contact surveys
  • Training a higher proportion of female Government health workers including at grassroots level

Conclusion

It is not inevitable that a greater proportion of male new leprosy cases will be found. These projects have proven that a greater proportion of new female leprosy cases may be detected. Attention must be made to achieve gender parity in new case detection and to discover the thousands of female cases that have been missed over the years.

James Pender

Introduction

In the context of health and development climate change is best described as a ‘risk multiplier’, for it exacerbates the impact of other processes and factors that threaten the health and wellbeing of communities. Leprosy is no exception as climate change will influence the factors that determine leprosy prevalence as well as disrupt and alter natural cycles and processes which impact on the livelihoods and wellbeing of people affected by leprosy.

Description of the case/issue

A major factor that governs transmission of leprosy is the viability of Mycobacterium leprae outside the human body which is related to the thermal-hydrologic regime of the local climate. However, there are many additional determiners of leprosy prevalence that are themselves affected by climate change such as migration, overcrowded settlements, nutrition, poverty, secure livelihoods, hygiene and sanitation.

People affected by leprosy may additionally find that climate change impacts are reducing their access to health care, affecting the viability of their medication, slowing their wound healing, increasing their risk of secondary infection and weakening their mental health.

Furthermore, communities in which people affected by leprosy reside are invariably highly marginalised: in remote/sub-optimal locations, ethnic/religious minorities, in areas of endemic poverty, facing co-morbidities, and already excluded groups. Marginalisation makes them potentially more vulnerable to climate shocks.

Additionally, leprosy stigma and disability may reduce their adaptation options and impair effectiveness of their response to climate related disasters.

Conclusion

Although the most important factors that govern leprosy prevalence may not be directly related to climate change, leprosy transmission is likely to be indirectly affected. Climate change will also impinge on the quality of life of people affected by leprosy.

Organisations working on leprosy must therefore ensure their operations are ‘climate proofed’ and must ensure people affected by leprosy are supported to increase their resilience to climate impacts.

Introduction

Leprosy remains a problem in Mozambique with 2,065 new cases of leprosy diagnosed in 2020. Out of these new cases, 399 were diagnosed with Grade II disability highlighting the need for active case detection and improving access to treatment for people in Mozambique.

Objective

In response, The Leprosy Mission Mozambique delivered a Leprosy Control and Complications Management Project (LCP) from 2018-2021, which aimed to improve the quality and sustainability of leprosy, other neglected tropical disease and disability services to reduce transmission of leprosy and prevent disability in the Cabo Delgado province of Mozambique, where leprosy is highly endemic.

Materials and Methods / Patients

Awareness and screening activities were conducted in villages in Cabo Delgado, self-care groups supported and an ulcer register was developed and implemented. LCP strengthened the Government health staff’s skills in leprosy diagnosis and treatment, trained community volunteers to identify the signs and symptoms and ensure that they suspected cases are referred for diagnosis. and worked alongside local communities to form village-based leprosy committees.

Results

Over the course of the project, 576 community volunteers and 55 health posts received training, contributing to the detection of 1,210 new cases of leprosy. 1,337 people affected by leprosy and other NTDs were actively participating in 68 self-care groups. 33 village-based leprosy committees were formed, who were able to plan local leprosy activities, improving accountability and sustainability.

Limitations

Throughout the project, implementation of activities and monitoring and evaluation was difficult due to the security situation in Cabo Delgado. This also resulted in stopping project activities in the northern and central districts.

Conclusion

The LCP project was successful in its aims to strengthen the health system and empower community groups to find and diagnose new cases of leprosy, improving the quality of lives for people affected by leprosy in the project areas.

Authors: Arulanantham, S.; Darlong, J.; Ebenso, J.; Guyan, M.; Udo, S.

Introduction

The 2020 ILEP Conference highlighted that limited or dwindling leprosy expertise at all levels is a challenge in almost every leprosy-endemic country and is a major obstacle to achieving zero leprosy. New innovative approaches are needed to enhance the knowledge and skills of existing health and development professionals, and to develop a new cadre of staff intent on defeating leprosy. However, there are a number of prerequisites before developing an innovative and effective approach to leprosy expertise development.

Description

This paper examines some of these prerequisites, and how the introduction of a newly developed Leprosy Competencies Framework can address these. Devised through a global consultation process, with input from experts across the field of leprosy, and piloted in Nepal and Nigeria, this Framework looks at 10 competency areas which when implemented together, will achieve holistic care:

  • Diagnosis
  • Transmission
  • Leprosy Control
  • Nerve Function Impairment
  • Reactions
  • Wounds
  • Eye Complications
  • Mental wellbeing
  • Social Aspects
  • Laboratory Skills

For each competency, the Framework maps the leprosy knowledge and skills needed for health and development workers at basic, intermediate and advanced levels. It can be used as a tool to clarify the knowledge and skills needed for each role, and to assess the gaps to identify training and development needs. The list of skills can also be used to develop standard operating procedures to ensure quality standards in leprosy care, which will provide the basis for high-quality training and mentoring materials, thus ensuring consistent standards of care across countries and globally.

Conclusion

New standardised tools are needed to achieve the triple zeros that can be utilised across the health and development sectors. This Leprosy Competencies Framework provides the structure required by leprosy-endemic countries to develop the knowledge and skills essential to achieve the triple zeros.

Rashmi Nayak, Dr. Archana Kumar.

Time and location of presentation: 11 November 2022 (Friday) Hall No- HICC 4 Timing of Session-10:30AM-11:30AM Session Name-Epidemiology IX: Migration and Networking

Background:

Migration is one of the social determinants influencing transmission dynamics of Neglected Tropical Diseases (NTDs) and leprosy is no exception. In India, leprosy is concentrated in high-risk clusters and Internal migration is common. The reasons for migration are primarily socioeconomic and may influence leprosy transmission and hamper control efforts.

As strategies of disease control become increasingly important to meet World Health Organization (WHO) standards, a more thorough approach is needed to investigate migration as a risk factor for disease

Research Question: Is migration a risk factor for Leprosy transmission?

Methodology:

Study Design - A cross-sectional study was conducted among all the new cases of leprosy registered for treatment at the study Centre.

Data collection - Data was collected on demography. Disease status, family, social, and personal history from the medical records in the hospital management system.

Results - To date, 52 newly diagnosed leprosy patients were interviewed, and the data collection is ongoing. The preliminary findings are: In general people who had history of migration (n=19) had severe form of disease as compared to non-migratory population (n=33). Number of patients with one or more nerve involved (58% vs 51%), BI 3 and above (68% vs 42%) and WHO disability grade 1 or 2 (57% vs 45%). The detailed findings will be presented at the conference.

Limitations: Data is from the tertiary hospital and may not be representative of people affected by leprosy in the study area.

Conclusion

Migration results in delayed diagnosis, severe form disease and complications thus resulting in a risk factor for transmission. This should be investigated more thoroughly and matched with the provision of health services within the national program

Disability

Introduction:

In leprosy, plantar ulcers are more commonly seen and they have well documented management strategies. We often see severe Type 2 reactions with ulcerating ENLs. These are usually extensive and involve most surfaces of the body. This is to present a case of extensive chronic ulcerating ENL where due to neglect the skin over both anterior Tibial surfaces was lost leaving 15cm x 5 cm linear dry wounds over both legs. Associated clinical factors prevented a flap or rotation graft to cover the exposed tibiae. This is to demonstrate a more conservative approach, of tibial drilling to facilitate granulation and healing, given the existing clinical situation.

The 45yr female patient was admitted in our hospital with a 5+ Skin Smear and history of being on Steroids from a Private Hospital since 3 years. She had a Haemoglobin of 4.7Gm% was hospitalised due to severe Type 2 Reaction with generalised ulcerating ENLs. She was unable to walk and was using a wheelchair for mobility.

She presented with the tibia of bilateral lower limb exposed for 19cm in right limb and 15cm length in left limb with a width of 7cm at right and 5cm at left limbs respectively. Routine wound care was initiated. But the exposed Tibia was not getting covered and flap surgery, grafts were not considered in view of the skin condition, anaemia and steroids. To promote granulation, drilling of the tibia was carried out under spinal anaesthesia at three interspersed sittings. Images of the granulation progress will be shown. Supportive dressings with Vaseline gauze after gentle cleansing were done on alternate days. Supplementary medication, in depth counselling, physio and occupational therapy for conservative management for NFI and diversion activities were carried on to overcome stress and depression related to disease & hospitalisation of about 200 days. The ulcer was healed fully. Now the client is happy and does her activity independently and has restored mobility.

Conclusion:

This novel treatment of bone drilling is effective in tissue healing over exposed bone by promoting granulation. Hence, we recommend this method in the management of difficult to heal cases of ulcers with exposed bony surfaces.

Introduction

Ulcers are a major cause of disability in leprosy. Up to 20% of people affected by leprosy are at risk of developing ulcer, even after being released from treatment. Ulcers can be chronic, taking months to years to heal and have a tendency to recur if not cared for properly. Identifying the prevalence of ulcers and profiling affected patients will help understand the magnitude of the problem in the community and to target the at-risk individuals for preventative care. Education on and practise of diligent self-care is mandatory in preventing ulcers and disability to improve quality of life.

Objectives

To describe the:

  1. Prevalence of leprosy ulcers in the community
  2. Socio-demographic and clinical profile of leprosy patients with ulcers in the community.

Patients / material and methods

This cross-sectional descriptive study is being conducted in one of the leprosy endemic states of India, in a rural setting. Data obtained from government healthcare registers was used to identify and trace leprosy patients in 9 blocks in the community who had completed MDT treatment 5 years ago. Patients with neuropathy and leprosy ulcers were identified and included. Socio-demographic and clinical details were collected using questionnaires after obtaining informed consent. Ulcers were photographed for measurement purposes.

Results

From 4 out of 9 blocks covered, 257 persons were found to have neuropathy. 142 patients had history of ulcer, and 68 patients were currently having ulcer. Data collection is ongoing. The ulcers will be described along with the data.

Limitations

Patients released from treatment since last 5 years only were included. Patients not on the government registers may have been missed.

Conclusion

Leprosy ulcer numbers in community are significant. Community-based self-care interventions are essential in prevention and management of ulcer burden.

Introduction: Leprosy can result in visible and functional impairments and disabilities if not treated early. There is a lack of credible data on the prevalence of disabilities due to leprosy-specific impairments. This factor is one of the main barriers to designing effective interventions and developing scientific methods to evaluate their effectiveness. Considering the above, a study was conducted to obtain baseline data to effectively plan, develop, and evaluate a follow-on study of an intervention to reduce the prevalence of disabilities in eyes, hands and feet among people affected by leprosy through enhanced self-care.

Objective: To estimate the prevalence of disabilities due to leprosy in the district of Janjgir-Champa, state of Chhattisgarh, India.

Patients / material and methods: A community-based, cross-sectional study was conducted among leprosy affected people from October 2021 to April 2022 in 3 blocks of Janjgir-Champa district. The list of leprosy patients registered for treatment in facilities during last five year was used to trace participants. Consenting patients who had impairments were included in the study and their basic demographic and clinical data (eye, hand, and foot disabilities) was collected using a semi-structured questionnaire on tablets. Data analysis was done using MS Excel.

Results: Out of 4956-line listed participants, a total of 1627 were traced for disability assessment and 1198 patients were assessed till date. About 426 participants were not found during data collection for different reasons such as migration, death, duplicates etc. A total of 254 (21%) patients were found to have either grade 1 or 2 impairments. A total of 4 patients were found with Lagophthalmos, 157 with hand and 201 with foot impairments.

Limitations: Tracing participants in urban areas of the study sites was difficult despite the best efforts. Hence, this might affect findings of the study.

Conclusion: This study emphasises the need to strengthen the initiatives of leprosy affected people related to their disability management through enhanced self-care.

Karthikeyan Govindasamy, Joydeepa Darlong, Samuel Watson, Paramjit Gill,

Warwick Medical School, University of Warwick, Coventry, CV4 7AL, UK.

The Leprosy Mission Trust India, CNI Bhavan, New Delhi – 110001, India.

Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK

Introduction

Plantar ulcers are leading complications in leprosy that require frequent visits to hospital and is associated with stigma. The extent of burden of ulcers in leprosy and its risk factors are scant impeding the development of targeted intervention to prevent and promote healing of ulcers.

Objectives

To document the prevalence of plantar ulcer and its risk factors in leprosy.

Material and methods

Databases (Medline, Embase, Web of Science, CINAHL, BVS, INFOLEP), conference abstracts and reference lists were searched for eligible studies. Studies were included that reported a point prevalence of plantar ulcer and/or its “risk factors” associated with development of ulcers (either causatively or predictively), including individual level, disease related and bio-mechanical factors. We followed PRISMA guidelines for this review. Random-effects meta-analysis was undertaken to estimate the pooled point prevalence of ulcers. Reported risk factors in included studies were narratively synthesised. This review is registered in PROSPERO.

Results

A total of 890 studies were identified for screening after removing duplicates. 14 studies (5 for prevalence of ulcer and 9 for risk factors) met the inclusion criteria. The pooled point prevalence of ulcer was 33% (95% CIs, 20% - 51%) and 8% (95% CIs, 5% - 14%) among those with foot anesthesia and among all people affected by leprosy, respectively. Risk factors for developing ulcers included: unable to feel 10 grams of monofilament on sensory testing, pronated/hyper-pronated foot, foot with peak plantar pressure, foot with severe deformities, and those with lower education and unemployed.

Limitations

Included studies contained data from tertiary care hospitals, which may overrepresent those with severe disease.

Conclusion

The burden of ulcer in leprosy is high and there is a need for a targeted intervention to minimize risk factors, prevent, and promote healing of ulcers.

Manivannan G, Raja N.R, Tina Mendis

Introduction:

The accessibility to leprosy rehabilitation services is limited in the rural areas due to the lack of professionals and service facilities at community level. The people affected by leprosy living in rural areas couldn’t reach the hospitals especially during Covid pandemic situation due to lock down was imposed throughout the state of Tamil Nadu.

Objective:

To use tele-communication to continue disability management care, self-care activities and its follow up during the Covid locked down phase.

Methodology:

The community-based project was in a situation to find an alternative to ensure the continuous monitoring and follow up of patients during the locked down phase. Trained local volunteers & leprosy champions used WhatsApp and Zoom calls. Leprosy champions created group video calls by using WhatsApp and Zoom to connect with rehabilitation professionals and to get consultations. Therapy was demonstrated in video calls; the provided services are followed up and monitored by community volunteers and leprosy champions. Project team demonstrated the disability management services such as ulcer dressing, self-care and exercises for patients in Zoom calls.

Results: :

12 Volunteers trained to use WhatsApp video calls and Zoom calls.

106 people affected by leprosy accessed tele rehabilitation services. 49% patients for ulcer care, 16 % for pre- operative exercise, 35% for aids and appliances.

Conclusion:

Tele rehabilitation services during the pandemic are one such good practice that demonstrates how people affected by leprosy can manage their disabilities closer to home. This can be a potential solution to manage leprosy and its disabilities in the community itself through involving the volunteers and leprosy champions in monitoring and follow up during the lock down phase. This could be continued even after relaxation of lock down phase to ensure the easy way of communication with patients and prompt rehabilitation care without any delay.

Introduction

Leprosy, a chronic infectious disease which has an impact on the physical, social, and psychological health of affected people that is frequently complicated by the appearance of reaction episodes especially ENLs. Women in developing countries, especially in rural areas, are responsible for household work and contribute to agriculture and husbandry. Acute physical illness, like ENLs, affect their work which leads to dependence, coping issues, low self-esteem and social exclusion. Poor health seeking behaviour further complicates the disease.

Method

A mixed methods study was done on women suffering with ENLs due to leprosy in a tertiary hospital from Jan 2020 to Dec 2021. Quantitative data was documented from the Hospital Management System. Qualitative data was obtained through interviews on a sample of women who were able and willing to give consent for the study.

Result

494 females registered in a tertiary care hospital out of which, 42 had T2R within a period of 2yrs. They were analysed on age, marital status, classification, duration of disease, ENL details, admissions and comorbidities. Lab parameters and compliance were also documented. Interviews were conducted with ten women to understand the effect of ENLs on work, pain, activities of daily living, participation at home, access to treatment, social discrimination, attitude of family members, mental health and other health issues.

Limitation

Comparing the results with a similar cohort of men would have enhanced our understanding.

Conclusion

The findings will provide a better understanding of what women with leprosy and ENLs face and go through. Women are vulnerable in a developing country especially in rural area and having ENLs make their lives more painful and at risk of further complications. A comprehensive approach is needed to improve management of ENLs in women.

Introduction:

Acute neuropathic foot also known as ‘Charcot’s foot’ or ‘hot foot’, is a known complication in leprosy and leads to progressive and permanent deformity of the joints of the foot. Early offloading and immobilisation of the foot can prevent the progression of this condition. Total contact casts using Plaster of Paris with complete bed rest is a common method for management of this condition. However, this requires prolonged Hospital admission and non-compliance of patients for this modality of treatment.

Methodology

We report the case of a 38 years old Female patient who presented with swollen left foot after 3 years of completing Multi-drug therapy. The foot was warm, erythematous, edematous and non-tender on examination and radiography of the foot showed features of acute neuropathic joint. Patient was placed in a Total contact cast with Plaster of Paris and bed rest for six weeks after which the cast was removed, and examination of the foot showed resolution of inflammation. However, a week after mobilising, she developed inflammatory changes again with forefoot valgus. We immobilised the foot now in a Patellar tendon bearing Total contact orthosis. It is a customized Tri-valved orthosis made of polypropylene sheets with a soft inner layer. Following which there was no further worsening of the disease process.

Conclusion

The Patellar tendon bearing modification of total contact orthosis holds several advantages as compared to routine plaster casts and Charcot resistant orthotic walkers. Patients can be discharged earlier with this, resulting in better compliance. There is more effective offloading from the foot. This can be better modified to individual footwear. Donning and doffing the orthosis is easier and it is lighter. The orthosis can be easily modified for volume changes of the foot.

Recommendation

We recommend patellar tendon bearing modification of the routine total contact orthosis for management of acute neuropathic foot in leprosy for early recovery and better patient compliance.

Vinay Kumar Pathak, Itu Singh, Ravindra P. Turankar, Shoor Vir Singh, Utpal Sengupta

Introduction

Several Mycobacterial infections including leprosy and tuberculosis are known to evoke autoimmune responses by modulating the homeostatic mechanism of the host. Recently, we have reported eight mimicking B cell epitopes (BCEs) between Mycobacterium leprae and host proteins, against which significantly higher levels of antibodies were observed in Type 1 Reaction (T1R) leprosy patients in comparison to non-reaction (NR) leprosy patients.

Aim

The aim of the present study was to evaluate a longitudinal immune response against BCE in T1R.

Material and Methods

A total of 100 clinically diagnosed cases consisting of 50 T1R and 50 NR were recruited and followed up for subsidence and onset of reaction, respectively. A total of eight BCEs between HSP65 of M. leprae and keratin, 50S ribosomal protein and lysyl tRNA synthetase of M. leprae and myelin basic protein (MBP) were used to evaluate the autoimmune response. The level of autoantibodies against BCE was estimated across each subject group before, during and after T1R.

Results

The mean level of antibodies against BCEs of HSP65 i.e., HSP4, HSP5 and HSP6 were higher in T1R when compared to NR (p < 0.0001, p < 0.001, p < 0.001, respectively). Similarly, antibodies’ level against BCEs of keratin i.e., KER1, KER2 and KER4 (p < 0.0001, p < 0.05, and p < 0.0001, respectively) and of MBP i.e., MBP50SB1 and MBPLMB2 (ns, p < 0.01, respectively) were higher in T1R. The longitudinal autoimmune responses against BCEs are being examined.

Conclusion

The present study indicated the association of BCEs with T1R. The validation of the association in a longitudinal study could be utilised for the development of a serological test for the diagnosis of T1R. Early diagnosis of the cases of leprosy with T1R may facilitate the treatment before the onset of deformity consequent to nerve damage in T1R leprosy.

Introduction

Erythema Nodosum Leprosum (ENL) is an unpleasant complication of leprosy which can lead to considerable suffering, impaired quality of life and results in long term disability.

The research study intends to find out whether administration of extra doses of Clofazimine for duration of 6-12 months to one group of patients who are suffering from ENL reactions can reduce the frequency and severity of the ENL reaction and its consequences. The other group of patients suffering from ENL reaction will be given placebo. Both groups will also receive standard treatment with steroids. The study will assess the results in each group by using standard scales for ENL severity and for quality of life as well as nerve damage and amount of steroid medication needed.

Results

If the trial is successful and demonstrates effectiveness of high dose clofazimine, we would expect that following this evidence more clinicians would use the drug for ENL and many future patients would then suffer less recurrent reaction, with less disability occurring.

Walker SL, Nicholls PG, Butlin CR, Nery JA, Roy HK, Rangel E, Sales AM, Lockwood DN

Introduction

Erythema nodosum leprosum (ENL) is an immunological complication affecting individuals with BL and LL. ENL affects up to 50% of individuals with LL and approximately 5-10% of BL patients. It is estimated that over 50,000 individuals of new leprosy patients diagnosed each year are at risk of ENL which may occur before, during or after successful multi-drug therapy (MDT). The inflammatory state of ENL causes significant morbidity and if untreated may cause death.

This is a multicenter international study, coordinated by London school of hygiene and tropical medicine. The study aims to examine the effect of METHOTREXATE and PREDNISOLONE (Intervention arm), compared with PREDNISOLONE alone (Control arm), on outcomes for individuals with ENL. The project aims to recruit 50 patients with acute ENL and 50 patients with chronic/ recurrent ENL. Participants will be followed up in the study for 60 weeks and will be reviewed on 26 occasions.

Results

The individual patient participating in the trial might possibly benefit from the use of methotrexate in that his ENL comes under control sooner than it would otherwise have done. The benefit to society (specifically to other future patients suffering ENL) will be significant as it will either demonstrate that methotrexate is safe and effective or it will indicate that this is not a treatment to be recommended (in which case future patients will not be subject to the risk of the drug when it is unlikely to help them).

Introduction

Leprosy is a mildly infectious disease exacerbated by poverty. Leprosy can have severe consequences for those who are unable to rapidly access treatment, causing disabilities. Mozambique has high rates of leprosy, with official leprosy cases registered in Mozambique now at 313,552. The provinces of Zambezia and Cabo Delgado are the most endemic, contributing around 90% of cases.

Description of the Issue

Leprosy carries a stigma which leads to discrimination, driven by communities that lack accurate information about causes and prognosis of the disease. This can prevent people affected by leprosy from participating socially and economically in community life. People affected by leprosy are often isolated and lack access to learning opportunities and livelihood options. This limits their ability to adapt to fast-changing economic conditions and can leave them dejected and without hope for the future. Medical treatment alone is insufficient to improve the overall wellbeing of many people affected by leprosy.

The Leprosy Mission Mozambique has secured funding from the UK Government to break down stigma and discrimination using messaging delivered via community-managed media hubs and community leprosy committees. Community health volunteers spot signs and symptoms of leprosy and make referrals to Government health staff. The health system is simultaneously strengthened to provide comprehensive and quality medical care for leprosy, thereby preventing disabilities. The project also works to empower communities economically through support for climate resilient livelihoods.

Conclusion

Historical social inequalities, weak community participation, and late diagnosis and treatment of leprosy all contribute to the exclusion of those affected. With leprosy’s related complications and stigma, hope fades for many people and an attitude of dependency and passivity can set in. Leprosy affects every aspect of life; a holistic community-based approach to stigma reduction and empowerment is therefore required to improve quality of life for those affected.

Introduction: This short report describes the rationale for and process of developing and refining a manual to assist professionals, workers, families, volunteers, and people with disabilities in low- and middle-income countries (LMIC), to make better use of appropriate and accessible communications technology.

Objectives: The manual is intended as a basic step towards enhancing disability and leprosy services where they are not accessible and/or affordable to people in remote areas of LMIC.

The primary goal of the manual then, was to assist local professionals, workers, families,

Remote disability and leprosy services via basic communications technology

volunteers and people with disabilities in Myanmar (as well as in other LMIC), to better use appropriate and accessible remote technologies for service provision.

Methods: A semi-formal process comprising several layers of feedback and review, and sub- sequent preliminary evaluation was encouraging.

Results: It suggests that the pilot version warrants further implementation as well as more formal research to rigorously evaluate the effectiveness and to refine the content of the manual.

Conclusion: The manual is a small step in the process of making rehabilitation, disability, and leprosy services more accessible and affordable to people in remote areas of LMIC. The encouraging feedback from reviewers and preliminary evaluation results, suggest that further implementation is warranted. More formal research to rigorously evaluate the effectiveness and refine the content of the manual will enhance the use of appropriate technology in volunteer/intermediate worker mediated disability and leprosy services.

Dr Helen Roberts, Ophthalmologist, TLM Hospital, Vadathorasalur, Tamil Nadu, India

“ There is no disease which so frequently gives rise to disorders of the Eye, as Leprosy does” Gerhard Armauer Hansen 1873.

Is this statement true today? Let me give you an example of changing profile of patients presenting with ocular symptoms.

Mr.X aged 44 yrs recently presented to my OP with complaints of Redness, Pain , Photophobia, dimness of vision Right Eye since 3 months ; On examination Vision on his RE is 6/60; Circumciliary congetion; Corne hazy , Pupil irregular in shape, sluggishly reacting to Light. Slit Lamp examination showed Keratin Precipitates of larger size, cells in anterior chamber, Posterior synechiae from 11’ clock to 2 ‘ clock. He had no complaints on his Left eye, vision was normal. LE examination was normal.

Ocular examination concluded with diagnosis of Anterior Uveitis Right Eye.

He is a known Diabetic on glycemic control; presented with multiple neuritis and erythematous multiple patches distributed all over the body a year ago ; completed MDT/MB for a year, Skin smear negative for AFB . He had gone to UAE on work while on 6th pulse of MDT- completed MDT regularly. While on 9th pulse he developed Uveitis RE – treated at UAE. Since then he had been developing recurring Uveitis on Right Eye alone.

Diagnosis: Hansen’ s disease- BT- BB / Type I reaction/ Multiple neuritis/ RE – Chronic granulomatous Uveitis / Diabetes under control

Challenges: –1) Granulomatous Uveitis is almost always bilateral , secondary to Chronic disease.

2) Uveitis happens as part of Type II reaction

Priorities:

All Leprosy patients need to undergo Eye examination at least once under slit –lamp

Red Eye – whether unilateral or bilateral is an emergency- require referral to Ophthalmologist.

Ocular complications can occur before, during and after completing Multidrug therapy. Patient needs to be educated and counseled appropriately.

Date & Day: 09 November 2022 (Wednesday) Hall No: HICC 4 Session Name: Disability II: Disabilities & Plantar Ulcers 1 Timing of Session: 4:30 PM - 5:30 PM

Mythily Vandana S Charles1, Joydeepa Darlong1, Karthikeyan Govindasamy1, Onaedo Ilozumba2, Sopna Choudhury2, Anjali Shrivastva1, Frances Griffiths3, Samuel Watson2, Jo Sartori2, Richard Lilford2

1The Leprosy Mission Trust India

2University of Birmingham, UK

3University of Warwick, UK


Introduction

Ulcers are a major cause of disability in leprosy. Up to 20% of people affected by leprosy are at risk of developing ulcer, even after being released from treatment. Ulcers can be chronic, taking months to years to heal and have a tendency to recur if not cared for properly. Identifying the prevalence of ulcers and profiling affected patients will help understand the magnitude of the problem in the community and to target the at-risk individuals for preventative care. Education on and practise of diligent self-care is mandatory in preventing ulcers and disability to improve quality of life.

Objective/s

To describe the:

  1. Prevalence of leprosy ulcers in the community
  2. Socio-demographic and clinical profile of leprosy patients with ulcers in the community.

Patients / material and methods

This cross-sectional descriptive study is being conducted in one of the leprosy endemic states of India, in a rural setting. Data obtained from government healthcare registers was used to identify and trace leprosy patients in 9 blocks in the community who had completed MDT treatment 5 years ago. Patients with neuropathy and leprosy ulcers were identified and included. Socio-demographic and clinical details were collected using questionnaires after obtaining informed consent. Ulcers were photographed for measurement purposes.

Results

From 4 out of 9 blocks covered, 257 persons were found to have neuropathy. 142 patients had history of ulcer, and 68 patients were currently having ulcer. Data collection is ongoing. The ulcers will be described along with the data.

Limitations

Patients released from treatment since last 5 years only were included. Patients not on the government registers may have been missed.

Conclusion

Leprosy ulcer numbers in community are significant. Community-based self-care interventions are essential in prevention and management of ulcer burden.

Farha Sultana

Introduction

T1R in leprosy result from the activation of cell immunity and causes acute onset of redness & swelling in leprosy skin lesion & sometimes lesion may ulcerate. Marked edema of the hand, feet & face may occur. Neuritis is often associated with T1R leading to disability. Patients with leprosy in reaction report a decrease of leisure and social activities, leading to social isolation. There is a need to study the physical and psychosocial impact of reactions especially on the visible parts of the body.

Objective

To study the Psychosocial & physical effects of T1R in females.

Methods: For this study all the T1R, who are coming to our tertiary hospital are selected & data will be collected from the HMS from 2020 & 2021. Patients were interviewed and questionnaires were prepared to understand the mental, physical& social impact of reactions.

Result: There were 2169 patients who registered in 2020-21, 391 no. of patients reported with Reactions out of which T1R were 223 and type2 were 168. In this study we focused on female patients with type 1 reaction which were92 and according to age we found that no reaction among (0%) 0-14 yrs group, 35.86% in15-30 yr, 27.17%, in 31-45 yrs, 28.26% in 46-60yrs and only8.69%. in>60 yrs age group.2 pateints from each representative sample age wise were selected and interviewed on psychosocial impact of T1R. Analysis in progress and findings will be presented in the conference.

Conclusion: This study will inform the impact of is mostly in the young age group female patients affected due to patches their cosmetic appearance was dull & their self esteem becomes low , which cause social withdrawal. This study will help to design health education materials to address them and also suggest intervention measures to manage them.

Anthony Meka1, Uche Akunna1, Linda Ugwu1, Nchekwube Ndubuizu1, Francis Iyama1, Chisom Chukwuma1, Okechukwu Ezeakile1, Edmund Ossai2, Charles Nwafor1, Joseph Chukwu1, Martin Njoku1, Ngozi Ekeke1, Ngozi Murphy-Okpala1, Chinwe Eze1, Sopna Mannan Choudhury3, Onaedo Ilozumba3, Jo Sartori3, Richard Lilford3.

  1. German Leprosy & TB Relief Association, Enugu, Nigeria.
  2. Department of Community Medicine, College of Health Sciences, Ebonyi State University, Abakaliki, Nigeria.
  3. Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK

Introduction

In low and middle income countries (LMICs) diseases such as leprosy affect the poorest of the poor. Antibiotics can kill the bacteria that cause leprosy, but the problem does not end with chemotherapy. Local nerve damage leads to repeated injury often-times resulting in recurring and disfiguring ulcers. Self-care practice is recommended as a routine way of managment and preventing recurrence. To further promote this, a simple user-friendly pictorial guide named sElf-cARe in LeprosY (EARLY) manual was developed by the researchers in collaboration with relevant stakeholders. The manual is based on the principle of Inspection, Soaking, Scrubbing, Oiling, Dressing and Footwear (ISSOD-F)

Objective

To develop a pictorial self-care manual aimed at promoting ulcer healing, reducing occurrence of new and recurrent ulcers in persons affected by leprosy.

Method

Intervention development team of prospective end users or persons affected by leprosy, researchers, leprosy program and care experts was constituted. The team assembled and worked with three source documents . The team was subdivided into three working groups for source documents review. Items for inclusion were selected and organized into a single draft and finalized through iterative processes. The draft manual was adapted into a pictorial version validated through a pilot study involving the prospective end users.

Results

A manual of sElf-cARe in LeprosY (EARLY) in form of illustrative colour pictures was produced. The pictures depicted steps in self-care routine practices of ISSOD-F.

Limitations

With additional resources the researchers could have included other stakeholders with non-leprosy chronic ulcers in the development of the manual. However we ensured that the most relevant individuals were included.

Conclusion

EARLY intervention development presented a good opportunity for producing a user-friendly pictorial manual for self-care in Leprosy. A trial is ongoing to assess the effectiveness of this manual.

Introduction

An estimated 30-50% of people with leprosy could eventually develop ulcers due to nerve damage or neuropathy. The current practice is the use of normal saline to dress ulcers. In recent times, there is a resurgence of interest in the use of honey for treatment of different kinds of wound as researchers continue to search for improved, cost-effective agents of wound healing.

Aim

The aim of this study is to evaluate the healing properties of raw, unadulterated African honey in comparison with normal saline dressing of leprosy ulcers.

Methods

The study is a single-centre, prospective, single-‘blinded’, parallel group, 1:1 individually randomised controlled trial. Study duration is 24 months (maximum). We aim to enrol between 90 and 130 participants over a 12-month recruitment period.

The intervention for this study is raw, unadulterated honey obtained from local bee farmers in North-Central Nigeria, applied twice-weekly. The participants in the control group receive usual care of twice-weekly normal saline dressings only.

Results

Sixteen people have successfully been recruited since commencement of the trial in March 2022. Two persons have been excluded for failing to meet inclusion criteria. One participant has been discharged after 8 weeks (16 dressing changes).

Conclusion

In this study, we are experimenting the use of honey for the treatment of ulcers in leprosy. Our expectation is to obtain a validation for the use of locally available, easily accessible, and cost-effective natural remedy for ulcer healing.

Introduction:

People affected by leprosy are at increased risk of ulcers from peripheral nerve damage. This in turn can lead to visible impairments, stigmatisation and economic marginalisation. Literature suggest that empowering patients to self-manage their condition to improve clinical, social and economic outcomes in marginalised people.

Objectives:

The objective of this study, known as SHERPA (Self-Help Evaluation for lepRosy and other conditions in NePAl) is to evaluate a service intervention called Integrated Mobilization of People for Active Community Transformation (IMPACT) designed to encourage both self-care and self-help in marginalised people including those affected by leprosy.

Methods:

A mixed-method evaluation study comprising two parts, first, a prospective, cluster-based, non-randomised controlled study to evaluate the effectiveness of self-help groups on ulcer metrics (people affected by leprosy only) and on four generic outcome measures (all participants) - generic health status, wellbeing, social integration and household economic performance. Second, a qualitative study to examine the implementation and fidelity of the intervention.

Impact/Results:

Baseline data collection took place from December 2020 to October 2021.

Limitations:

The evaluation design has been applied to an existing programme whose roll out has already begun. Moreover, follow up is limited at 24 months because of the duration of the funding envelope. We therefore will not be able to measure how effects may manifest in the longer term.

Conclusions:

We hope that our work in opportunistic or rapid response research will be an inspiration for others who want to evaluate interventions that are likely to be scalable because they have arisen in and from the service, rather than instigated as a research project.

Dr Indra Napit

Introduction:

Leprosy is curable with multidrug therapy and treatment in the early stages can prevent disability. However, local nerve damage can lead to injury and consequently recurring and disfiguring ulcers.

Objective:

The aim of this study is to evaluate the treatment of leprosy foot ulcers using an autologous blood product; leukocyte and platelet-rich fibrin (L-PRF) to promote healing.

Methods:

Consenting participants (n=130) will be individually randomised in a single-blinded, controlled trial. Participants will be 18 years of age or older, admitted to the hospital with a clean, dry and infection-free chronic foot ulcer between 2 and 20 cm2 in size. The intervention involves the application of leukocyte and platelet-rich fibrin (L-PRF) matrix on the ulcer beds during twice-weekly dressing changes whereas the controls receive saline dressings. Primary outcomes are the rate of healing assessed using standardised photographs by observers blind to allocated treatment, and time to complete re-epithelialization. Follow-up is at 6 months from randomisation.

Trial update:

A total of 283 participants have been screened and the target of 130 participants have been enrolled by 26th May 2022 despite the challenges of COVID19 pandemic. Six months follow up have been completed in 78 participants, and all further follow-ups will be completed by the end of November 2022.

Discussion:

This research will provide valuable information on the clinical and cost-effectiveness of L-PRF in the treatment of leprosy ulcers. An additional benefit is the evaluation of the effects of treatment on quality of life for people living with leprosy ulcers. The results will improve our understanding of the scalability of this treatment across low-income countries for ulcer healing in leprosy and potentially other conditions such as diabetic ulcers.

Discrimination

Nikita Sarah, The Leprosy Mission Trust India

Day & Date: 11 November 2022 (Friday) Timing of Session: 9:00 AM to 10:00 AM Hall No: HICC 4 Title of Session: Social Aspects VII: Social Rehabilitation

Background

For long, India’s laws interpreted leprosy as an ‘incurable and virulent’ disease and allowed it to be a legitimate ground for divorce, separation, and other forms of social ostracisation and economic exclusion. While there was a pressing need for reforming archaic laws, there was hardly any momentum to bring this issue to the centre stage. In fact, awareness of legal discrimination was low among stakeholders, including NGOs, associations of persons affected by leprosy, and even policymakers,

Intervention

The initial days of intervention were fraught with challenges. There was no precedence on how to go about repealing laws that discriminate against persons affected by / cured of leprosy. It was only in 2014 that a first earnest attempt was made to collect evidence about discrimination, analyse them to build a case for their amendment, and build an understanding of processes that can help in repealing laws: parliamentary processes, strategic litigations, petitions, etc.

Over the last eight years, a series of complementing initiatives—research, collaboration, communication, and advocacy—were taken towards sensitising and mobilising legislative, judiciary, and civil society to galvanise efforts for repealing discriminatory laws. Timely support of Union Ministers, the Law Commission, the Supreme Court, Member of Parliament, legal policy think tank, lawyers, ILEP and other partner organisations at different crucial moments enabled us take concerted action on repealing discriminatory provisions in Central and state laws.

Between 2016 and 2020, the Centre and nine states repealed 22 discriminatory laws, which considered leprosy a valid reason for dissolution of marriage, prohibiting someone from attending schools and colleges, holding a responsible position in academic institutions, and getting nominated as a member of governing bodies.

The way forward

As opposed to 2014, we now have more partners to sustain and scale up our efforts. Capacity of different ILEP partners and NLEP consultants has been built over the years, so that they can continue liaising with respective state governments. While the list of yet-to-be-repealed laws is still long, we have managed to set the ball in motion.

We must continue to apprise the government of the challenges these laws pose to persons affected by leprosy. The task ahead is to partner with more relevant organisations, mobilise resources and direct efforts towards the repeal of discriminatory laws, and passage of a new comprehensive legislation—Elimination of Discrimination against Persons affected by Leprosy (EDPAL) Bill, 2015—which contains principles of non-discrimination and equal protection before law.

Presenters: Sinphia Ajith and Raju M S

Date & Day: 11 November 2022 (Friday) Timing of Session: 11:30 AM - 12:30 PM Hall No: HICC 4 Session Name: Stigma & Discrimination - Session 2

Introduction:

Among the children who visit counselling centres after diagnosed of leprosy considerable number report to have discontinued their education due to social stigma and related problems. The counselling centre of urban metro tertiary care hospital of TLM at New Delhi have made efforts to analyse and document along with the process of counselling the reasons for discontinuation of school. The reasons found as per the perceptions of the dropouts are analysed in this paper.

Aims and Objective:

  1. To estimate the approximate proportion of school dropouts among the leprosy affected children
  2. To analyse the reasons as per the respondents perceptions for dropping out from the school.
  3. To suggest possible NLEP interventions that can be incorporated for follow up of school defaulters and fulfil counselling needs.

Materials and Methods: The study was conducted at The Leprosy Mission community Hospital, Delhi. All the children about a total of 70 who visited counsellor over a period of 4 years from 2017-2020, have been studied

Results: From the total sample school drop-outs included 22 (31.4%) boys and 7 (10%) girls whereas 52(74.3%) boys and 18 (25.7%) girls visited counselling centre. Out of the total dropped out(29 children) 8 (27.6%) boys and 2 (6.9%) girls resumed their education after follow up and counselling but the rest on aggregate 65.5% of the dropouts not resumed because of various reasons viz. stigma and fear of discrimination even discriminated due to their deformity, reaction.

Limitation: This study was carried out based on the data of a single centre.

Conclusion: Treatment of the child cases is not effective unless we follow up them and provide regular counselling of the parents to make sure that every child continue schooling and prevent dropouts of both the genders.

Introduction: COVID-19 pandemic overwhelmed the healthcare machinery and disrupted whatever access people affected by leprosy had to resources and support systems. Economic shutdown and strained healthcare systems further made it challenging for people affected by leprosy to continue treatment, be it receiving MDT or getting ulcer dressed or steroid dosage adjusted.

Objective: The study wanted to document how COVID-19 and economic shutdown affected access to preventive and rehabilitative treatment. The focus was on understanding problems at the grassroots, on both demand and supply side of healthcare services, particularly for people affected by leprosy. The study aimed at generating evidence to advocate for disaster-inclusive health policies and programmes.

Methodology: The team conducted telephonic and face-to-face interviews with medical superintendents, public health consultants, residents of leprosy colonies, ASHA workers and children/youth affected by leprosy and other disabilities. They looked through peer-reviewed research papers, media reports and conducted an online survey of about 500 students and young professionals, with most of them having experienced leprosy or disability.

Results: Existing systems for prevention and management of leprosy were disrupted due to singular focus on reigning in COVID-19. In some cases, delayed treatment led to disease progression, with disability setting in. Concentration of physiotherapy and other disability management services in district hospitals, coupled with reduced or no income, prevented people from accessing these services. Reduced income put disproportionate burden on persons with disabilities and their households, which already bear extra cost (accessible housing & equipment, assistive devices, etc.), forcing them to depend on charity and relief aid.

Conclusion: Persons with leprosy and other disabilities can access preventative and rehabilitative care only when the points of care are decentralised, tele health is leveraged and staff capacity is built for providing advanced leprosy and disability management services.

Introduction

Considerable resources are spent in LMICs on implementation of community-based programmes for health improvements, including establishment of self-help groups (SHGs). SHGs are also frequently employed in the empowerment of people affected by leprosy. However, sustainability of such programmes is often not taken into consideration when planning. An evaluation of the sustainability of these programmes is critical in determining how effective programmes are in achieving their goals over the longer term and whether activities continue once the funding ends.

Objectives

To i) explore/establish the evidence on sustainability of self-help programmes; ii) explore/understand the implications of our findings for leprosy self-help programmes.

Methods

We systematically searched PUBMED, Web of Science, EconLit and Google Scholar for peer reviewed studies published to January 2022. Studies were included if they evaluated a self-help group/programme, from LMICs, for people with a health issue, and/or health providers and program managers who have developed or managed self-help interventions.

Results

The initial search identified 6116 articles, of which 637 were duplicates. After screening titles, 71 article abstracts were screened. Fifteen articles met our inclusion criteria following full-text review. Studies were conducted in India (n=11), Africa (n=3) and Nepal (n=1). Ten studies were focused on SHGs for women. Overall, studies reported better outcomes for individuals that participated in SHGs compared to similar non-participants. Sustainability of SHGs was influenced by factors such as: trust, social environment, economic support and security, leadership capacity and socioeconomic status (moderately poor more likely to continue than poorest).

Discussion

Studies provided limited description of interventions; detailed descriptions will help understand full implications. Most SHG programmes focused on health outcomes resulting from implementation of SHGs rather than longer term sustainability. Also, majority of the studies reported results from programmes that had evolved from an initial SHG programme without discussing approaches to sustainability, if any.

Jessica Ochalek, MSc, MPH1, Naomi Gibbs, PhD1, Rita Faria, MSc1, Joydeepa Darlong, MBBS, MD2, Karthikeyan Govindasamy, BOT, MPH2, Anthony Meka, MBBS, MPH3, Dilip Shrestha, MSc4, Indra Bahadur Napit, MD4, Mark Sculpher, PhD1

1University of York

2 The Leprosy Mission Trust India

3 Leprosy and TB Relief Association (DAHW), Nigeria

4 The Leprosy Mission Nepal

Introduction

Self-help groups are voluntary mutual assistance groups of individuals with a common characteristic, such as leprosy or impoverishment. They exist to meet a collective objective such as the improvement of health or promotion of wellbeing, and may be considered for provision through publicly funded healthcare. Such groups may confer benefits and/or costs beyond the healthcare sector.

Objectives

Our objective is to identify and critically appraise the methods used to establish the value of self-help interventions that seek to improve health in LMICs. We define value as the benefits gained net of the benefits forgone from funding it. We consider whether the methods employed can meaningfully inform decisions by Ministries of Health and other sectors, including donors, around whether to fund such interventions.

Material and methods

We systematically searched MEDLINE, Embase, EconLit and Global Index Medicus for peer reviewed studies published between 2014 and 2020. Papers were included if they evaluated a self-help intervention, were based in an LMIC, included at least one health outcome and intervention costs and reported the methods used. We completed a narrative synthesis of the papers with a focus on how papers account for intersectoral effects and provide information to inform decisions.

Results

Nine studies met our inclusion criteria. There was heterogeneity in the extent to which (or whether) all of the relevant costs, benefits and potential disbenefits and opportunity costs were included, and how these were reported.

Limitations

Estimation of the value of self-help groups without potential health benefits is beyond the scope of this review, and is an area for future research.

Conclusion

Informing decisions around funding self-help groups in a way that ensures that their value is accounted for requires collection and reporting of particular types of data. Funders can make better informed decisions when evidence is organised in a cross-sectoral framework.

Introduction:

To break the vicious cycle of poverty and poor health outcomes associated with leprosy, self-help groups (SHG) have been implemented, based in communities and involving the formation of groups of people who can provide mutual support and form saving syndicates.

Objectives:

Our objective is to determine the extent to which SHG programme activities have continued in the time beyond the funding period and record evidence of sustained benefits, at four study sites across three leprosy endemic countries.

Methods:

We will retrieve and analyse any project documents. This will be followed by semi-structured interviews with people involved in delivery of the self-help intervention, potential beneficiaries and people in the wider environment who would have been familiar with the programme. Interviews aim to identify barriers and facilitators to success and sustainability. Data will be analysed thematically and compared across groups and countries.

Impact:

Comparative analysis of data from across the four geographical areas will result in a comprehensive investigation of the concept of sustainability SHG programmes for people with leprosy, disability, other conditions causing ulcers or marginalised, once funding has ceased.

Our findings will have implications for a wider population as people affected by leprosy are in the minority in the self-help groups in all of our participating countries.

Limitations:

There is a risk of bias and conflict of interest as interviews will be conducted by individuals from the implementation organizations. We also expect recall bias as participants will be asked to recall events from their past. We expect that our triangulation of methods and data sources will somewhat mitigate the bias.

Conclusions:

While there is literature on the existence of SHGs and their effectiveness during the funded periods, little is known about the sustainability of these interventions. Our study will help answer this knowledge gap.