• Grant: LRI Regular Grant
• Research priorities: Operational research
• Country: India
• Project no.: 703.15.15
• Budget: € 163,279
• Duration: September 2015 - August 2018
• Status: Completed

Full project title: A comparison of three types of targeted, community-based health education aimed at promoting early detection

Project coordination
The Leprosy Mission Trust India

Partner
NLR India Foundation

Aim: The aim of this research study was to compare the effectiveness of three community-based methods
in preventing delays in diagnosis and promoting increased and early case detection. 

Final project summary
In some districts in India, there are still large number of new cases of leprosy are being reported. The population there is mostly rural and low in socio-economic level and the level of awareness about leprosy is very low. The first point of health care provider is the local non-formal health practitioner (non-allopathic) who is not able to diagnose leprosy. These patients often have disabilities resulting from untreated (delay in diagnosis of) leprosy. There are many reasons for delay in getting treatment such as ignorance, lack of awareness, socio-economic levels and delays due to health system. All these factors could lead to delay in the diagnosis of leprosy cases and the disability. Therefore, the aim of this project is to compare three different community-based methods which would bring patients to the right health provider, who would recognise and be able to treat leprosy. The three methods are;
1. Training of local non-formal health practitioner on signs and symptoms of leprosy and motivate them to refer the cases who come to them to the nearest centre where they will get the correct medicine
2. Health education to newly diagnosed leprosy patients on early signs of leprosy. It is well known that household contacts of leprosy patients have a higher risk of developing leprosy. The newly diagnosed leprosy patients are educated and motivated to go home and examine his own contacts for early signs, and if anyone has suspicious lesions to bring them to the doctor for confirmation.
3. Increasing awareness in the community regarding early signs of leprosy, which will lead to more patients recognising signs of leprosy and reporting to clinics/doctors earlier.

During the study period,589 non-formal health practitioners were sensitised on signs and symptoms of leprosy to refer those suspected to have leprosy for diagnosis. A total of 346 among sensitised were available for follow-up training during the second year. They were regularly followed up either through face to face contact or telephone to keep motivating them to refer leprosy suspect case to appropriate treatment facility. Through them 672 suspected cases were referred of whom 137 were confirmed to be suffering from leprosy (first method). The research group motivated all the newly diagnosed patients (second method) and taught them about early signs of leprosy. They referred back 809 of their contacts, to the health centre of whom 256 were confirmed to be suffering from leprosy. The third method implemented was to train and orient community members along with the local government (called Panchayat Raj Institutions in India), as they have influence over the people and are often consulted in health and other matters. 23031 local community members were oriented during 1610 trainings. Through them 1233 suspects were referred and 377 new cases confirmed.

The analysis of number of new cases reported and their characteristics revealed that there is a considerable increase in the number of new cases notified in the areas where the awareness (third method) programme was implemented as compared to other two methods and the area where no intervention was implemented (control area). Among the new patients, the number of patients presenting with a disability at the time of diagnosis and those with a less severe form of the disease have shown a decreasing trend, indicative of early reporting to the health system, which was the main aim of this project.

Impact

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. Govindasamy K, John A, Lal V, et al. PloS one. 2021; 16 (12) : e0261219

Presentations:
- A comparison of three types of targeted, community-based health education aimed at promoting early detection: Methods. International 
   Leprosy Congress - 2016
- Survey on Leprosy awareness, knowledge and attitudes in the community across three endemic states in India. International Leprosy
   Congress - 2016
- A comparison of three types of targeted, community-based health education aimed at promoting early detection. National Leprosy
   Conference 2017
- A comparison of three types of targeted, community-based health education aimed at promoting early detection. International Leprosy
   Congress – 2019

• Grant: LRI Regular Grant
• Research priorities: Operational research
• Country: Bangladesh
• Project no.: 703.15.10
• Budget: € 55,256 
• Duration: May 2015 - December 2016
• Status: Completed

Full project title:
Contact cohorts: how long to continue annual examinations?

Project coordination
Leprosy Field Research in Bangladesh

Aim: The aim of the study was to establish an evidence base for contact examination policies, by determining the rate and type of new case finding amongst cohorts of household contacts examined at different time points after the index case was diagnosed.

Final project summary
Since it is known that members of the household  of a person newly diagnosed with leprosyhave a higher risk (than general population) of becoming leprosy cases, it is normal practice to offer them physical examination on at least one occasion to  confirm/exclude leprosy. This may be done at clinic or during a home visit. It is not clear from available published evidence whether re-examinations at annual intervals are useful or for how long they should continue. It is also not known whether amongst all household members, who are not are equally at risk, some could be identified who would benefit from  a more intensive or longer  period of surveillance.                                                                                                                                                 

This study addressed such questions through a mixture of analysis of previously recorded information (on new cases found by routine contact surveys) and collection of new information by one extra active contact survey at a later time point. A special feature was to  also check those people who had joined the household after the diagnosis & treatment of the first case in the household, and to recheck (as far as possible) those who had left the household.

A large quantity of good quality data has been collected and by study end date analysis still had to be performed. However as a result of the study covering households of 11,221  leprosy cases diagnosed within past 20 years, the staff have detected an extra 82 new cases amongst the 50, 260 contacts enrolled as subjects (in addition to 991 new cases previously detected during  routine contact surveys and already treated). The data suggest that contacts may be at higher risk, and that contacts of cases who are multibacillary type or have positive skin smears or have more advanced disability at diagnosis are also at higher risk.

Impact

Outcome of late healthy household contact examinations in leprosy-affected households in Bangladesh. Butlin CR, Nicholls PG, Bowers B, et al. Leprosy review. 2019; 90 (3) : 305–320. 

• Grant: LRI Regular Grant
• Research priorities: Operational research
• Country: Nepal
• Project no.: 703.15.01
• Budget: € 99,893
• Duration: April 2015 - December 2018
• Status: Completed

Full project title:
Delays in diagnosis and treatment, Leprosy in Nepal

Project coordination
International Nepal Fellowship 

Aim: ‘Delays’ are of critical importance in leprosy control work. The longer the delays, the greater the chance for a transmission of the disease to others and for lasting negative consequences upon the life of the individual: physically, socially, emotionally and economically. The aim of the project has been to learn about delays in leprosy diagnosis and treatment among leprosy patients in western Nepal. 

Final project summary
The routes to an accurate diagnosis had generally been long, frustrating, and costly, more so in the north than in the south. The exceptions are the routes of those with a household member recently on MDT, those who in an early stage happened to have come upon one of the INF Out-patient clinics for what they up till then thought to be a skin problem, and of those whose early signs were identified in a case-finding campaign. The mean delay in the 3 cohorts was found to be: 25.2; 29.8; and 28.1 months, respectively with no greater gender difference. 

In Nepal, active leprosy case finding is taking place but on a limited scale and the great majority of patients present voluntarily. Health workers tend to blame the long delays on the patients, commonly suggesting that those affected delay because of the leprosy stigma. The ‘patient delays’ were long nevertheless they only corresponded to half or less than half of the mean cohort delays. For most of the respondents the main part of the delay was after the start of health-seeking outside the home, i.e. within the health services: traditional; private; and public. Commonly, there were misdiagnoses and inappropriate treatments concurrently with a progression of ill health, fear, and expenditures. The longest mean delay was after the start of health-seeking within the biomedical sector -  including private as well as public health amenities. Most consultations, by far, took place within the private health services. Commonly, the first visit within the private sector was a local pharmacy, sometimes visited once, sometimes several times. For most, the initial step within the public (government) health services was a visit to a Health Post or a Sub-Health Post. At the same time, in each cohort a large proportion of the respondents reported that their health-seeking had not included a government health facility.

For leprosy to be eradicated delays have to be shortened. In regard to voluntary presentations this will only be accomplished as patterns of health seeking are understood and taken into account for interventions. As this study shows, increased leprosy diagnostic skills within the public (government) health services will not suffice but have to go together with leprosy capacity building within the private health services. Moreover, such efforts have to run parallel to context-sensitive leprosy awareness-raising within society as a whole.

Impact

Factors contributing to delay in diagnosis and start of treatment of leprosy: analysis of help-seeking narratives in northern Bangladesh and in West Bengal, India. Nicholls P G, Chhina N, Bro A K, et al. Leprosy review. 2005; 76 (1) : 35-47. 

Stigma and leprosy presentations, Nepal. Engelbrektsson U, Subedi M. Leprosy review. 2018; 89 (4) : 362–369. 

The challenge of health-seeking: recollections of leprosy inpatients in post-elimination Nepal. Engelbrektsson U, Subedi M, Nicholls P. Leprosy review. 2019; 90 (4) : 433–443.

Health Seeking Processes of Leprosy Patients in a Hill District of Nepal. Engelbrektsson U, Subedi M. AMC Journal. Nepal Journals Online (JOL). 2021; 2 (1) : 1-24. 

Presentation at the 3^rd Nepal Health Research Council Summit in Kathmandu, at an International Conference in Pokhara organised by Nepal Sociological Association (2017), and at the National Annual Leprosy Report Meeting, Kathmandu (2019).

Report-sharing workshops/sessions in Surkhet, Nepalgunj, Pokhara, and Butwal, the national board of IDEA Nepal included and the District TB/leprosy officers.

Printed prototype information material for the shortening of delays for the following target groups:
The General Public - Nepali, Hindi, Awadhi, Tharu
Patients and Family members – Nepali
Female Community Health Volunteers – Nepali
Health Workers who refer for diagnosing – Nepali
Health Workers who diagnose Leprosy – Nepali