There are crucial new transmission tools on the horizon, but how do we lay the groundwork for their implementation?
“We cannot defeat leprosy if we do not change behaviours.” These are the words of Dr Rishad Choudhury Robin, the National Lead on Research for TLM Bangladesh.
“We also cannot defeat leprosy without the interventions of advanced medical science. But even if we were to have new diagnostic tests, enhanced post-exposure chemoprophylaxis (PEP), or a leprosy vaccine, they are only helpful interventions if people in endemic communities are willing to accept them and their behaviours allow for a successful rollout.”
This is where TLM Bangladesh’s project on changing perceptions towards leprosy started.
We cannot defeat leprosy if we do not change behaviours.
As the TLM Bangladesh team work with NLR to find an enhanced regimen for PEP under the PEP++ project, they recognised that they may face some reluctance or refusal from communities.
The traditional post-exposure chemoprophylaxis in leprosy is a single dose of the antibiotic rifampicin. Current PEP programmes across the world today are implementing what is known as SDR-PEP (SDR means Single Dose Rifampicin). This single-dose approach has proven effective, but the Bangladesh team are working on a regimen of multiple antibiotics that are taken across a specified time period or doses. It is hoped that this approach will improve the efficacy of PEP.
As Dr Rishad says, “Anytime you ask a person to take a medication you will have to tell them why they are taking it. If it is just one dose of an antibiotic, it is not so hard. You hand it to them and they take it in front of you. But if, for example, you tell people they have to take one every morning or every night, it gets a little harder. Even as a doctor I often forget to take medication!
“With PEP++ we have to ask people to be ready to return to receive further doses and this requires a behaviour change. People must be motivated to return, which means they have to understand the importance of completing the full PEP++ regimen. If our communities do not understand leprosy and do not understand the prevention of leprosy, how can we ensure a successful implementation of PEP++?
“A classic example of this was when I came across a pharmacist who was due to be part of the PEP++ trial. We explained the process to him, but he initially refused. He went away and researched it online and then came back to us to say he was willing to receive the medication. Knowledge and attitudes affect behaviour and when we started the programme, we did not have a good understanding of knowledge and attitudes towards leprosy in the communities where PEP++ was due to take place.”
As the PEP++ project was in its infancy in late 2022 and 2023, the TLMIB team undertook both qualitative and quantitative research in the implementing communities to find out how leprosy was understood and how receptive these communities would be to a more complex regimen for PEP.
They used three tools for gathering quantitative data: the EMIC Community Stigma Scale, the Social-Distance Scale, and KAP. To gather qualitative data they ran focus group discussions and in-depth interviews.
97% of respondents knew that leprosy is not permanent and could be treated with medicine.
79%of respondents knew that leprosy disabilities can be prevented with early treatment
Half of respondents did not know the signs and symptoms of leprosy
47% of respondents did not know what caused leprosy
13%of people were reluctant to visit a patient after their diagnosis
43% of persons affected by leprosy tried to hide their diagnosis from others
18% of persons affected by leprosy felt less respect from others since their diagnosis
35% of persons affected by leprosy tried to hide their diagnosis from their family
27% of people do not want to buy food from a person affected by leprosy
17% of people showed negative attitudes towards persons affected by leprosy in case of marriage.
10% of people showed negative attitudes towards the persons affected by leprosy as a caregiver of their children
Dr Abhijit is the lead for TLMIB on the PEP++ project and he explains how this data will be used, “We want to measure changes in attitudes and how our interventions can impact that. Once we had this data, we began developing IEC materials (Information, Education, Campaign). We developed these in collaboration with communities so that they directly addressed the misconceptions and concerns of the communities.
“We have been distributing these IEC materials and will be running the same qualitative and quantitative studies in 2025 to see how perceptions and the understanding of leprosy have changed following our intervention.
“We collected this data from four groups of people: Leprosy index patients, family members of persons affected by leprosy, general community members, and healthcare workers – both those trained in leprosy and those who are not. We believe this approach will give us a well-rounded view of how leprosy is perceived and understood across the community.”
It is helpful for our teams to have this improved understanding of their communities as they seek to engage them as partners within the PEP++ programme, but the advantages will not stop with PEP, as Dr Rishad explains,
“This data tells us a story about the communities we are serving that affects almost everything we do. No doubt it has an impact on our community programmes, but as the National Research Lead I can see how so many of our upcoming research programmes will be stronger because we have this data about our communities.
“In the coming years we hope to look at mental health in these same communities, we hope to do research on prosthetics and other disability interventions, we hope to research the socio-economic factors related to leprosy. All of these programmes will be stronger because of the data we now have. And this is not only helpful for us; we have shared this data with the National Leprosy Control Programme, as well.”
As Dr Abhijit explains, “Our teams are well known and well respected in these communities. This is in large part thanks to DBLM Hospital, through which we have been serving the community for decades. When our teams arrive in the community and want engagement with a research programme, the community is more receptive than they would be if we were parachuted into another community where we had no reputation at all.
“Beyond that, our field research programme is well established in North Bangladesh – it is where the original pilot for PEP took place in the early 2000s – so community members are familiar with field research and what it means to take part.
“Whilst community engagement was straightforward for us, we were still concerned about our approach to data collection. For the first time we were doing this digitally and there was a risk that a lack of digital literacy might hold us back. However, we trained our teams extensively on how to use the digital tools and we were really happy with the result. That investment of time at the start of the process has proved very worthwhile.”
Dr Rishad believes this kind of research is a key enabler of the biggest interventions against leprosy transmission.
“We are not far away from having field-friendly diagnostic tests, enhanced PEP, and maybe even a leprosy vaccine. However, we would be very wrong if we thought that implementing these game-changing interventions would happen with seamless engagement from our communities. Look at what happened with the Covid vaccine; communities were not primed for this and there was huge resistance and scepticism from some quarters, which had consequences for its rollout.
“As we anticipate the arrival of these new tools in our fight against leprosy transmission, we would be doing ourselves a favour if we laid the groundwork now. When we understand the misconceptions around leprosy, the fears that people have, then we can correct these fault lines so that the ground is stable when we arrive at the implementation of a new tool.
“Now that we know where we stand within our communities in Bangladesh, we feel much more comfortable about implementing PEP++ and any other new tools that arrive with us. I hope other programmes globally will feel the same if they run a perception study.”
Photo credits: Ruth Towell and Kate Gent
