Determinants of patients' delay with disability in the diagnosed leprosy cases in the three major states of India: A case-control study.

BACKGROUND: Skin lesions are the most common early symptoms of leprosy, often ignored by patients at an early stage and misdiagnosed as other dermatological diseases by healthcare personnel, leading to delay in diagnosis and treatment of leprosy precipitating permanent neurological deficit, deformities and serious disabilities. AIMS: The objective is to evaluate the duration of delay and factors responsible for the delay in reporting of patients, among the newly detected leprosy cases (Grade 1 and Grade 2 disability patients). METHODS: A case-control study was conducted during 2014-2016 in three major states of India (Delhi, Gujarat and West Bengal) in 140 randomly recruited newly registered adult leprosy patients (aged 18 years and above) with Grade 2/1 disabilities (cases) and 140 Grade 0 disability patients (controls) in each of these Indian states. RESULTS: It is established that the major contributors for the delay in the early diagnosis of leprosy have been patient-related factors. The median patient delay in the three states of Delhi, Gujarat and West Bengal were five months (0.7-1.8), 2.8 months (2-14) and 12 months (2-24), respectively. LIMITATIONS: The study design is case-control and has an inbuilt reporting bias due to the retrospective nature of data collection but the data collection was carried with caution to reduce the recall bias. As the study is carried out in three states, generalisation of interpretation was cautiously executed. The matching ratio of cases and controls was 1:1 in this study, but we could not increase the controls due to operational feasibility during the conduct of the study. CONCLUSION: Patient delay is a crucial factor responsible for the disability among new leprosy cases. A higher patient delay in these three states reflects that the community is not aware about the signs and symptoms of leprosy. Reducing patient delay is very important for reducing disabilities in the newly diagnosed cases.

A comparison of three types of targeted, community-based methods aimed at promoting early detection of new leprosy cases in rural parts of three endemic states in India.

BACKGROUND: India achieved elimination of leprosy nationally in 2005, but since then the number of patients with grade 2 disability at diagnosis increased steadily indicating delay in diagnosis. Therefore, there was a need for public health interventions which can increase case finding in their earlier stage. The objective of this study is to compare the effectiveness of three such community-based interventions; 1) Enhancement of community awareness on leprosy; 2) Education and motivation of "Index" leprosy cases; and 3) Involvement of Non-Formal Health Practitioners (NFHPs) to promote early detection of new cases of leprosy. METHODOLOGY/PRINCIPAL FINDINGS: Three community-based interventions were implemented between April 2016 and March 2018, embedded within the National Leprosy Eradication Program (NLEP) of India. Interventions were 1) increasing awareness through involvement of Gram Panchayat (local government) in the community regarding early signs of leprosy (Awareness), 2) providing health education and motivating newly diagnosed leprosy patients to bring suspects from their contacts (Index) and 3) training local non-formal health practitioners (NFHP). Each intervention was implemented in a group of ten blocks (sub-division of district) with an additional ten blocks as control (with no intervention). The main outcomes were number of new cases detected and number of grade 2 disability among them. They were obtained from the routine NLEP information system and compared between these interventions. On an average, there was an addition of 1.98 new cases in Awareness blocks, 1.13 in NFHP blocks and 1.16 cases in Index intervention blocks per month per block after adjusting for changes in control blocks during the same period. In terms of ratio, there was a 61%, 40% and 41% increase in case notification in awareness, Index and NFHP intervention, respectively. Overall, the percentage of grade 2 disability across intervention blocks declined. CONCLUSION: The Awareness intervention appears to be more effective in detection of new cases, compared to Index case motivation and sensitization of NFHPs. However, it is important to stress that while selecting strategies to increase early diagnosis it is important to determine, which is the most appropriate for each context or area and must be decided depending on the local context.

Measuring endemicity and burden of leprosy across countries and regions: A systematic review and Delphi survey.

BACKGROUND: Leprosy is a chronic infectious disease caused by Mycobacterium leprae, the annual new case detection in 2019 was 202,189 globally. Measuring endemicity levels and burden in leprosy lacks a uniform approach. As a result, the assessment of leprosy endemicity or burden are not comparable over time and across countries and regions. This can make program planning and evaluation difficult. This study aims to identify relevant metrics and methods for measuring and classifying leprosy endemicity and burden at (sub)national level. METHODS: We used a mixed-method approach combining findings from a systematic literature review and a Delphi survey. The literature search was conducted in seven databases, searching for endemicity, burden and leprosy. We reviewed the available evidence on the usage of indicators, classification levels, and scoring methods to measure and classify endemicity and burden. A two round Delphi survey was conducted to ask experts to rank and weigh indicators, classification levels, and scoring methods. RESULTS: The literature review showed variation of indicators, levels, and cut-off values to measure leprosy endemicity and/or burden. The most used indicators for endemicity include new case detection rate (NCDR), new cases among children and new cases with grade 2 disability. For burden these include NCDR, MB cases, and prevalence. The classification levels 'high' and 'low' were most important. It was considered most relevant to use separate scoring methods for endemicity and burden. The scores would be derived by use of multiple indicators. CONCLUSION: There is great variation in the existing method for measuring endemicity and burden across countries and regions. Our findings contribute to establishing a standardized uniform approach to measure and classify leprosy endemicity and burden at (sub)national level, which would allow effective communication and planning of intervention strategies.

Risk of disability among adult leprosy cases and determinants of delay in diagnosis in five states of India: A case-control study.

INTRODUCTION: A high proportion of grade 2 disability (visible deformity) is indicative of delay in detection of leprosy and leprosy is one of the major causes of preventable disability. We conducted this study to determine the risk factors associated with disability (G2D and G1D) among adult new leprosy cases and to measure their strength of association. METHODS: A multi-centric case-control study was undertaken in five states of India i.e. Andhra Pradesh, Delhi, Gujarat, Maharashtra and West Bengal). Among new adult patients, cases were defined as those with disability (G2D and G1D) at the time of diagnosis and controls were defined as those without any disability (G0D). Delays were quantified based on patient recall across a timeline. Patient delay defined as the time period between first noticed symptom by the patient and the first visit to any health care provider (HCP); HCP delay defined as the time period between patient's first visit to any HCP and the confirmation of diagnosis of leprosy; and total delay defined as the sum of both patient and HCP delays. RESULTS: A total of 1400 new leprosy patients (700 G2D/G1D and 700 G0D) across five states were interviewed. Among G2D/G1D, the median patient delay was 8 months compared with 4 months among G0D. The median HCP delay was 2 months for G2D/G1D and 1 month for G0D. The median total delay was 14 months for G2D/G1D and 6.2 months for G0D; observed median difference between groups was statistically significant (p<0.001). When patient delay was more than 3 months, odds of G2D/G1D at diagnosis were 1.6 times higher compared to when patient delay was less than 3 months. When the HCP delay was more than one month, the odds of G2D/G1D were 1.4 times higher compared to when the HCP delay was less than one month. When the patient had multi-bacillary type leprosy the odds of G2D/G1D at the time of diagnosis was nine times higher compared to pauci-bacillary type leprosy. CONCLUSION: Patient delay is the major reason for risk of disability (G2D/G1D) among adult leprosy patients. A patient delay of more than 3 months from the notice of first symptom is a significant indicator for the disabilities among adult leprosy patients. Early case detection campaigns like active surveys in endemic spots should be done periodically as this can reduce delays and promote early diagnosis. Additionally, the program should lay greater emphasis on raising community awareness regarding the disease. Also, health care provider delay of more than 1 month have been significant risk factors for disability among adult leprosy cases. Hence, periodical capacitation of all HCPs including private practitioners would significantly contribute to reduce diagnostic delay and promote timely referral and early detection.

Development and validation of a scale to assess attitudes of health care providers towards persons affected by leprosy in southern India.

INTRODUCTION: Assessment of attitudes of health care professionals is important as negative attitude could constitute a major deterrent to care-seeking by persons affected by neglected tropical diseases (NTDs) such as leprosy. Leprosy continues to pose a major disease burden in India with an annual new case detection rate of 10.17 per 100,000 population. This paper reports on the development and validation of a culturally appropriate scale to measure attitude of health care providers (HCPs) towards persons affected by leprosy in Tamil Nadu, India. METHODOLOGY/PRINCIPAL FINDINGS: The Affective, Behavioural and Cognitive (ABC) model of attitudes guided the development of the scale. Steps in scale development included qualitative interviews and focus group discussions with medical officers and paramedical staff selected from high prevalence districts in Tamil Nadu, India which informed the development of the draft scale. Reviews of existing attitude questionnaires in related areas further contributed to scale development and together helped to generate a large pool of items which was then subjected to Thurston's scaling method for selection of items from this pool. Face and content validity were obtained, following which internal consistency and test, re-test reliability were assessed. Scaling exercise resulted in 11 items being discarded from an initial pool of 38, owing to the poor agreement among experts regarding relevance. Face and content validity were good with experts endorsing relevance and applicability of items. The intra-class correlation coefficient (ICC) for test re-test reliability of the 27 item scale was 0.6 (95% CI: 0.20-0.78) indicating marginal intra-class correlation. The overall Cronbach's alpha was 0.85 while the alphas for each of the affective and behavioural components was good at 0.78 and 0.69 respectively indicating a good degree of consistency and homogeneity between items but the alpha for the cognitive component was low at 0.53. CONCLUSIONS: The ABC model of attitudes guided the development of the scale, ensured a mix of 27 items tapping into the three domains of Affect, Behaviour and Cognition which best explained the attitude construct. With good validity and alphas for each of the affective, behavioural components and overall alpha estimates, this scale can be a valuable tool to provide accurate estimates of the true attitudes held by HCPs. This, in turn, would be useful to obtain insights for appropriate intervention programmes that would help change negative attitudes of HCPs towards persons affected by leprosy. With some adaptations, the scales can be validated for other NTDs as well.

A study to assess the usage of MCR footwear in West Bengal, India.

The routine use of appropriate footwear is an important intervention to prevent disability in leprosy. We conducted a study to assess utilisation of MCR footwear and observe the condition of footwear. Fifty-six persons affected by leprosy who had been provided MCR footwear in the preceding 3 years were paid home visit and administered a semi-structured interview schedule. Although a total of 30 participants reported using special footwear currently, only 10 reported usage during participation in social events. On observation, 16 pairs were found to be in an unusable condition owing to foot deformity and another 14 pairs in poor condition. In order to ensure greater utilisation of special footwear, the National Programme may seek local solutions through engagement of cobblers and shoemakers with appropriate training in customisation. Persons affected by leprosy should be empowered to appreciate the benefits of special footwear and to take care of themselves, including taking responsibility for using their footwear.

What parents should know while their child is on MDT: insights from a qualitative study in eastern India.

In order to provide high quality leprosy services to children affected by leprosy, it is necessary to actively engage parents. A qualitative study was undertaken as part of routine monitoring of field activities in West Bengal, India. A non-probability sample of 20 parents whose child was currently undergoing treatment was interviewed to explore the experiences of parents with regard to the diagnosis of leprosy and the treatment of their child. The most common initial symptom was a white patch and the median duration between recognition of the symptom and care-seeking was 6 months. The most commonly reported side-effect was a black discolouration which had led to non-adherence as well as resulting in school absenteeism. None of the parents had any knowledge of reactions. Although current strategies have enabled early case detection, there are challenges related to ensuring treatment completion. Emphasis should be laid on interpersonal communication to empower parents, enabling them to appreciate the side-effects and recognise the complications early and be actively engaged as a treatment partner while their child is on MDT.