Despite great strides in the treatment of leprosy through multi-drug therapy (MDT), people affected by leprosy can still develop disabilities years after their treatment has been completed.
Many people struggle to cope with the disabling consequences of the disease, causing not only significant difficulties with physical health but can also have an impact on a person’s mental health and well-being. It is therefore important to ensure there is a continuum of care following diagnosis and treatment.
The World Health Organisation (WHO) recommends people diagnosed with paucibacillary (PB) leprosy – a milder form of the disease – receive follow-up for three years after receiving treatment; for a multibacillary (MB) leprosy diagnosis – a more severe form of leprosy - the WHO recommends follow up five years post-treatment.
The Robert Luff Foundation funded our research on the long-term risk of disability among leprosy patients in 2020/2021. The results highlighted the dynamic nature of leprosy among high-risk patients in Lepra’s referral centres, where 3 in 10 patients had a leprosy-related disability at least at one point in time. This merited further research into how extensive the long-term risk of disability is in a wider cohort of patients.
Phase II of the Robert Luff Foundation Study was taken into a high prevalence area in Bihar state, with patients diagnosed with leprosy in 2008/2009 outside of Lepra’s programmatic area. Over the course of six months, we will visit 583 men and women and assess the risk of leprosy-related disability 13 years after their initial diagnosis. We will look at risk factors, access to health care, and changes from grade 1 or grade 2 disability.
The fieldwork is ongoing, with the aim to complete data collection by early March 2022.
The aim of this study is three-fold. Firstly, we hope the evidence will advise appropriate vigilance, health seeking and support among patients and care providers. This includes informing the patients at risk of the signs and symptoms of neuritis and reactions, which, if left untreated, can lead to disability. Secondly, we wish to raise awareness among healthcare practitioners of the long-term risk people affected by leprosy face. Finally, we also hope to contribute to the existing body of evidence on the long term-risk factors of disability among people treated for leprosy who are without access to specialised services.