NTDs affect more than a billion people worldwide. Many NTDs have disabling consequences. Well-known examples include leprosy, lymphatic filariasis, trachoma, onchocerciasis and Buruli ulcer. There is an urgent need of more data on the burden of disease complications, impairments and other aspects of disability among persons affected by these diseases. These data are needed for political advocacy, fundraising, needs assessments, intervention planning, programme management, and monitoring and evaluation of programmes and interventions. One reasons for the gap in data and evidence for effectiveness of interventions is the lack of agreed instruments to assess the various aspects of impairments and disabilities across NTDs. Because of the many similarities in the aspects between NTDs, we believe it is possible to use a cross-NTD toolkit of instruments for this purpose.
Together with the Disease Management, Disability and Inclusion (DMDI) Working Group of the NTD NGDO Network (NNN), we are developing such a toolkit. Although the toolkit will remain a dynamic work-in-progress, the tools that have been validated can already be used. The selection of instruments is based on the conceptual model of the WHO International Classification of Functioning, Disability and Health (ICF).
We aimed to include existing instruments that had already been validated for other conditions, preferably in one or more NTD-endemic countries. In addition, we preferred generic instruments over disease-specific tools, so that one instrument could potentially be used across different NTDs.
A systematic literature review was conducted to identify existing tools to assess and monitor NTD-related morbidity and disability and evidence of their validity. This was followed by a Delphi consensus-building study with 21 NTD experts representing 9 NTDs. This process resulted in a prototype NTD Morbidity and Disability (NMD) Toolkit with 9 instruments covering all domains of the ICF. The Table shows the instruments included.