Development of a toolkit for the assessment and monitoring of disabilities due to neglected tropical diseases.

Background Neglected tropical diseases (NTDs) are a group of tropical diseases affecting over a billion people worldwide. People affected often live in poverty and have to deal with the disabling consequences of many of these diseases. The similarities in disabling consequences, geographical spread, prevention methods and treatment of NTDs, ask for an integrated control. However, international comparable data about NTD-related morbidity and disability to improve such integrated actions are lacking. Methods A mixed-methods research design was used to develop a generic, cross-NTD toolkit aimed at assessing and monitoring NTD-related morbidity and disability. The most important phases were an international Delphi study and an initial validation. The Delphi study among NTD and disability experts consisted of three iterative rounds, aimed at investigating priority areas and needed tools in the NTD field. The initial validation of the prototype toolkit took place in the Ceará state of Brazil, conducting interview administered versions of the tools that were ranked by the Delphi study experts. The 34 participants included were affected by at least one of the NTDs occurring in this state. Results The Delphi study resulted in a prototype toolkit that covered the domains from the International Classification of Functioning, Disability and Health (ICF). The tools that were ranked highest within a domain were included in the toolkit. This report focuses on aspects of validity, usefulness and relevance of two of these tools: the WHO Disability Assessment Schedule (WHODAS) 2.0 12-items, included for the assessment of functional limitations and the Participations-scale Short, included for the assessment of participation restrictions. Results from the initial validations suggest those tools will be useful among persons with Chagas disease, leishmaniasis, leprosy or schistosomiasis. Discussion and conclusion Assessment and monitoring of functional limitations and participations restrictions due to Chagas disease, leishmaniasis, leprosy or schistosomiasis can be done with the WHODAS 2.0 12-items and the P-scale Short. It is recommended to further validate these (and other) tools among other NTDs in differing environments and cultures.