The need for an integrated, contextual, and holistic, minimum essential data collection tool for leprosy and lymphatic filariasis disability in India

Abstract

Aim To develop an integrated, contextual, and holistic, minimum essential data collection tool to reliably assess, and obtain a broad overview of issues needing attention among people suffering with WHO Grade 2 leprosy disability and WHO Grade 3 and above lymphatic filariasis (LF) disability in India, to enable the design of integrated and customized interventions to improve their situations. Process A review of universal tools measuring activity limitations, stigma, participation restrictions, mental wellbeing, quality of life, and community stigma, was carried out for their applicability to leprosy and LF disability. A focus group discussion was conducted with field staff who had used these tools, to learn from their experiences. Questions for the minimum essential data tool were formulated based on their applicability and relevance to people with severe leprosy and LF disabilities, their context, and to our aim. Results A hybrid quantitative and qualitative minimum essential data tool was developed, integrating leprosy and LF disability related issues to holistically assess situations, capture lived experiences, and enable participation of persons with leprosy and LF disability in designing solutions for the issues which impact them most. Conclusions Integrated approaches are cost-effective and efficient when customized for the local context and the people impacted. Our tool will be piloted in Bihar, India to assess its reliability in the estimation of needs, and its effectiveness in designing interventions using a person-centered approach, to improve situations for people living with leprosy and LF disability within the cultural and environmental context of rural India.