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.

Selective Special Drive (SSD): an effective tool to promote new case detection through community participation--an experience during 2005-2010 in Mumbai slums.

As per the Guidelines of National Leprosy Eradication Programme (NLEP), Government of India, new case detection (NCD) in leprosy is to be promoted by voluntary reporting through Information, Education and Communication (IEC). Accordingly, in addition to the routine IEC activities, Maharashtra Lokahita Seva Mandal (MLSM) carried out Selective Special Drive (SSD) in slum pockets in Mumbai since 2005-06. The SSD methodology prescribed under Leprosy Elimination Action Program (LEAP) of ALERT-INDIA was adopted which included selection of slum pockets, identification and training of Community Volunteers (CVs), door-to-door focused IEC through CVs using standard IEC material and referral of voluntarily reported suspected cases to nearby Health Posts under General Health Services or to Leprosy Referral Centre (LRC) established through MLSM for diagnosis and treatment. During the years, 2005-06 to 2009-10, MLSM conducted five annual SSDs in 53 slum pockets having 187,391 house-holds with the total enumerated population of 882,114 of which 563,040 (63.8%) could be covered through house-to-house IEC by 772 trained CVs/CHVs. As a result, 108 new cases (PB - 79 and MB - 29) were detected with the NCD rate ranged between 13/100,000 and 34/100,000 which is much higher than the reported NCDR in Mumbai (i.e. 6/100,000). Of the new MB cases 6 were lepromatous leprosy cases. Voluntary reporting of new cases was also found to be enhanced during the subsequent period following SSD. SSD activity encourages intensified IEC with community participation and integrates General Health Services resulting into better voluntary reporting of new cases. It is, therefore recommended that the SSD with the methodology prescribed under LEAP may be considered for incorporation in NLEP.

Community based rehabilitation programmes: monitoring and evaluation in order to measure results.

Although Community Based Rehabilitation has now formally existed for almost 30 years, few papers have been written about the results of this approach. The authors hope to contribute with this paper towards methodologies that will help to measure results of Community Based Rehabilitation programmes. The importance of establishing--prior to the development of Community Based Rehabilitation--an extensive baseline has not been extensively covered as the importance of it is almost self-evident; yet the lack of baseline data often severely hampers the possibility of being able to measure the effects of Community Based Rehabilitation. The article places considerable importance on management information systems and monitoring, since it is believed that evaluation will greatly benefit from both the existence of baseline data as well as a well-developed and well-implemented information system. The present article emphasises the need for participatory processes in the development of baseline data and information systems. Four key areas for measuring CBR are highlighted: people, power, public society and partnerships. Finally, a tool is presented in order to evaluate (or monitoring and evaluation) systematically. What gets measured gets done; If you don't measure results, you can't tell success from failure; If you can't see success, you can't reward it; If you can't reward success, you're probably rewarding failure; If you can't see success, you can't learn from it; If you can't recognize failure, you can't correct it; If you can demonstrate results, you can win public support.

Evidence for the effectiveness of rehabilitation-in-the-community programmes.

The present literature review identified 29 reports from 22 countries in Asia, Africa and Central America reporting on the outcomes of rehabilitation-in-the-community programmes in low and middle income countries published between 1987 and 2007. Interventions included home visits by trained community workers who taught disabled persons skills to carry out activities of daily living, encouraged disabled children to go to school, helped find employment or an income generating activity, often involving vocational training and/or micro-credit. Many programmes had a component of influencing community attitudes towards disabled persons. The information collected shows that such programmes were effective in that they increased independence, mobility and communication skills of disabled persons, helped parents of disabled children to cope better and increased the number of disabled children attending schools. Economic interventions effectively increased the income of disabled persons although they rarely made them financially independent. CBR activities result in social processes that change the way community members view persons with disabilities, increase their level of acceptance and social inclusion and mobilise resources to meet their needs. In most countries, coverage of CBR programmes is inadequate. CBR initiatives appear most beneficial to those who have mild physical disability and can communicate verbally. There is a need to invest in the generation of quality evidence about the outcome and impact of rehabilitation-in-the-community programmes to ensure its continued support.

Integrating community-based rehabilitation and leprosy rehabilitation services into an inclusive development approach.

Community-based rehabilitation (CBR) has been described as a strategy for leprosy rehabilitation. Developments in CBR and leprosy rehabilitation services, including Socio-economic rehabilitation (SER) show that both approaches aim to become part of a community development process. The basic assumption is that people with disabilities will benefit most from being included in mainstream programmes implemented in their own community, e.g. programmes aiming to improve livelihood. These developments have a decisive impact on the roles of all people involved in the rehabilitation process. Where the emphasis in the rehabilitation process shifts to the community and becomes part of community development, the rehabilitation workers need different competencies than were required in vertical disability programmes. This article focuses on the changing roles of mid-level rehabilitation workers and trainers and therapists. In many programmes a mid-level cadre was introduced to work with people with disabilities and their families. Consequently, trainers and therapists have moved away from direct, hands-on interventions and focussed on training this mid-level cadre and offering specialised referral services. This system was primarily developed to provide treatment at all levels, including community level. However, when rehabilitation becomes part of a community development process there is a need for 'change agents' and a structure that supports them. The success of integrating disability specific programmes like CBR and SER, into inclusive development programmes will depend largely on the extent to which rehabilitation workers are able to reinvent themselves as 'change agents' and redefine their roles, positions, and competencies.

Role of target groups in integrated leprosy programmes.

The introduction of integrated leprosy services into the primary health care set-up has taken away active case-detection in the community and is replaced by passive reporting by the suspected, afflicted individuals. This can only be made operative effectively with intensive IEC activities in the community. A research study involving school-children (219,000) in leprosy work achieved spectacular success in new case-detection, effective monitoring, completion of MDT and coverage of a large number of individuals (750,000). The results evaluated on a representative sample of 20,000 school students (pre- and post-test), showed over 90% success in creating awareness about the cause of the disease, its symptoms, curability by fixed duration MDT and better attitudes and perceptions of the community towards leprosy-affected individuals. It is emphasised that, in view of the experience gained from the study, other more cohesive and disciplined target groups, such as scouts and guides, NCC cadets, NSS volunteers, should be identified for leprosy work throughout the country in a planned and coordinated manner in order to implement and sustain leprosy eradication activities in the near-elimination and post-elimination phases.