• Grant: LRI Regular Grant
• Research priorities: Disability
• Country: Philippines
• Project no.: 705.17.07
• Budget: € 109,223
• Duration: May 2017 - April 2020
• Status: Completed

Full project title:
Inflamed skin lesions along an area of a peripheral nerve as a patient self-help proxy indicator in detecting early signs of nerve function impairment in leprosy

Project coordination
Leonard Wood Memorial Center for Leprosy Research (Philippines)

Aim: This study aims to assess whether skin lesions can be used as proxy indicaor to detect early signs of nerve function impairment in leprosy.

Final project summary
Many patients with leprosy (PWL) cannot afford regular clinic visits due to work or limited resources. Some may be improperly assessed by front-line health workers untrained to evaluate leprosy, especially the related complications affecting the nerves. This results in late detection of nerve abnormalities resulting in visible deformities.

It is therefore important to identify a readily visible proxy indicator (skin sign) that will alert patients or front-line health workers of early signs of nerve abnormalities allowing timely referral and treatment before deformities set in. One possible indicator readily visible by the naked eye is the presence of a red and swollen skin lesion overlying a nerve. For example, if a previously flat and pale patch along the inner half of the right arm suddenly becomes red, painful and swollen, this may be an early signal that the right ulnar nerve underneath is at risk of functional impairment which if not promptly treated may lead to nerve damage or clawing of the right hand.

The research group will conduct an observational study comparing skin signs with nerve signs underneath. The goal is to empower patients to conduct regular self-help monitoring using signs visible by the naked eye. This will encourage self-reporting resulting to prompt referral and treatment of complications preventing nerve damage or onset of deformities.

Furthermore, this approach will alert and guide patients and front-line health workers to identify high risk cases requiring prompt care and attention.

The research project will answer two questions:

1. Can skin signs be used by patients as “self-help” monitoring tool in detecting early signs of nerve abnormalities?
2. Are patients with red, painful and swollen lesions overlying a nerve more prone to develop visible deformities compared to other patients?

• Research priorities: Disability
• Country: India
• Status: Completed

Project coordination

The Schieffelin Institute of Health Research & Leprosy Centre

In this project a personalised link with patients will be established through a common cost effective technological platform to influence and help the adherence to the treatment, monitoring and follow up of these patients. Effective IEC strategies for leprosy affected patients will be identified.

Mobile Technology - A novel approach to facilitate and motivate self-care among the leprosy affected

Duration

March 2017 - December 2020

Project coordination

The Schieffelin Institute of Health Research & Leprosy Centre (India)

Project summary

In leprosy, some significant factors perpetuate the onset of deformity and make disability permanent and progressive. The low socio-economic status, stigma, ignorance, lack of motivation and level of understanding of impairments and deformities are some key factors that lead to the irregularity and discontinuation of treatment by the patient. The non-adherence of the patient to treatment and self-care practices can lead to further deterioration and worsening of the impairments. An effective way to communicate, motivate, enhance the knowledge and understanding of the disease to the patient has always been a priority for any health education program in leprosy.

This study, used a 24 hour toll-free number and through mobile technology to assess the skill and knowledge of the person affected by leprosy on impairment and disability and further helped them to prevent these, as well as recommended to seek appropriate care. The research team through a social worker and a therapist utilised the mobile phone technology and 24 hour toll-free number to interact and provide feedback to the patients. The feedback was based on the patient’s queries and was tailor made for that specific patient. A total of 162 leprosy affected patients were followed up, of which 54 were in the intervention and 108 were in the control group. All the resources available for the leprosy affected patient through Government schemes, centres providing treatment for leprosy and its complications in the district and state were systematically collected for providing effective feedback to the patients through the toll-free number and the mobile handsets.

Treatment adherence was significantly higher among patients who were provided with mobile phones and 24 hour toll-free number facilities than of those who were given conventional and traditional advice and counselling.. In the intervention group there were two patients who defaulted in their treatment. However, in the control group there were 87 who defaulted their treatment. Viable mobile (m)-health strategies were developed considering the key factors identified from both the groups which either restrict or motivate the patient to carry out self-care such as their profession, suitability of time, gender and social issues.

Targeted m-health self-care strategies at specific time period to leprosy affected patients would help in reducing impairments. Using the mobile handsets of the patients to call and the provision of toll-free number at the health centre would help in the adherence and reduction of impairments in leprosy affected patients.

Related publications

Paul SK, Kumar DP. Use of mobile technology in preventing leprosy impairments. Disabil Rehabil Assist Technol. 2022 Jul;17(5):602-604.

 Budget

€ 35,902   |    Project number: 705.17.41

• Grant: LRI Regular Grant
• Research priorities: Disability
• Country: Indonesia
• Project no.: 704.16.49
• Budget: € 64,636
• Duration: April 2016 – March 2017
• Status: Completed

Full project title:
Inclusive Medical Rehabilitation for Persons with Disability due to Leprosy, Lymphatic Filariasis (LF) and Diabetes Mellitus (DM) in Indonesia

Project coordination
Netherlands Leprosy Relief Indonesia

Partners
Diponegoro University Semarang (Indonesia)
VU University Medical Center (the Netherlands)

Aim: This study has systematically and comprehensively collected information about enabling and disabling factors influencing the successful provision of inclusive medical rehabilitation services for persons with disability due to leprosy, lymphatic filariasis and diabetes mellitus. Knowledge and models that are generated from this research will be used for advocacy and to improve services. 

Final project summary
Medical rehabilitation in Indonesia is still limited in its availability and accessibility to the majority of people needing it. For people living in poverty, lack of information and insufficient insurance coverage are only some of the barriers hindering access to medical rehabilitation. Persons affected by neglected and socially stigmatised diseases such as leprosy are still rejected in many hospitals in Indonesia. Diabetes Mellitus (DM) as a modern lifestyle disease is more and more common also in rural areas. Prevention and care of wounds is not usually part of rural health centres, while on the other hand the same services are generally offered to persons affected by leprosy in the same centres. There is, thus, a need to develop and improve inclusive medical rehabilitation services for all.

This study set out to map the existing gap in accessibility, availability, acceptability and quality of rehabilitation services in Indonesia. This was done from the perspective of persons most excluded and poor – persons disabled by leprosy and by lymphatic filariasis (LF). Persons with disabilities due to diabetes were also included to explore how services can be combined and become more comprehensive. Data was collected both from affected persons and from different service providers, using several quantitative and qualitative methods. Persons affected by leprosy participated in data collection and in analysis.

Generally, results of data collection showed different perceptions on providing integrated service for leprosy, LF, and DM. Health professionals agreed that health care for the three diseases could be done in one place, especially for wound care. It will also enhance the awareness of other patients about each other’s diseases. Although the two leprosy referral hospitals had been providing medical rehabilitation for leprosy and DM patients, such as: surgery, amputation, physiotherapy and providing the daily activities aids, they had no experience in providing medical rehabilitation for LF. Respondents agreed that providing care to the three conditions will save costs. However, there was also some fear on the possibility of disease transmission and stigma. Moreover, there was also limited human resources to provide rehabilitation in one place. Results indicate there should be a clear task division between units and facilities.

Impact

Denny HM, Darmawan Y, Ginandjar P, Widjanarko B, Sriatmi A, Umamah A, Sakundarno M, Prasetyanti W (2019). Inclusive medical rehabilitation for persons with disability due to leprosy, lymphatic filariasis, and diabetes mellitus: Mapping the gap in three leprosy endemic districts in Indonesia. BioRxiv, pp. 1-14 

• Grant: LRI Regular Grant
• Research priorities: Disability
• Country: Myanmar
• Project no.: 704.16.16
• Budget: € 24,270
• Duration: February 2016 - February 2017
• Status: Completed

Full project title:
A case exploration in Myanmar to document issues and provide a foundation for future scale development

Project coordination
Menzies Health Institute of Queensland, Griffith University (Australia) 

Partners
The Leprosy Mission Myanmar

Aim: The research group conducted an in-depth exploration of  "burden of treatment" in leprosy within Myanmar as a case example. 

Final project summary
The treatment of leprosy has many dimensions which place multiple demands on people affected by leprosy and their families. These demands include taking medications regularly, managing wounds, monitoring reactions, co-ordinating care, scheduling and attending appointments. They are all parts of the “workload” of treatment that people with leprosy are required to fulfil. They are aspects of the “burden of treatment” they have to deal with. This burden is often amplified for people in remote or poor areas due to travel costs, struggling health systems and lack of specialists.

These burdens can result in people becoming overwhelmed and not following treatment guidelines or opting out of treatment altogether with all its related negative effects.

This project has explored this issue from the perspective of people with leprosy across Myanmar. The study included the views of a variety of people who had (or were undergoing) leprosy treatment on their experiences of treatment and services and the other aspects of life that are affected or influenced by their treatment. This was done in 23 focus groupls, led by specifically trained people affected by leprosy together with services staff.

The findings made clear that the burden related to leprosy treatment is both complex and substantial. Key examples of the findings included financial issues, constraints on livelihood, the psychological impact of skin discoloration after the treatment, as well as feelings of insecurity about being released from treatment and a lack of confidence about their status after treatment. The latter were often related to the burden of insecurity and fear related to common myths about leprosy treatment. The findings from this study will form the basis for a scale on burden of disease in leprosy, and will be important for understanding and assessing barriers to treatment completion. 

Impact

Presentations:
- Pim Kuipers, Zaw Moe Aung, Lin Thet, and Roe Nwe Wai. Burden of treatment: A factor in leprosy-related disability and reactions?
   Presentation at the International Leprosy Congress, Beijing, 2016.
- Zaw Moe Aung, Lin Thet, Roe Nwe Wai, Pim Kuipers.  Burden of treatment in leprosy  Presentation at the LRI Spring Meeting,
   Veenendaal, Netherlands, 2017.
- Roe Nwe Wai, Pim Kuipers, Zaw Moe Aung, Lin Thet. Burden of treatment in leprosy: Project outcomes.  Presentation at the LRI Spring Meeting, Veenendaal, Netherlands, 2018.