Towards a toolkit for cross-neglected tropical disease morbidity and disability assessment

Background Neglected tropical diseases (NTDs) are a group of often chronic and disabling infectious conditions, closely related to poverty and inequities. While it is estimated that millions of people are affected, accurate and internationally comparable data about NTD-related morbidity and disabili...

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Published in:	International health Vol. 8; no. suppl_1; pp. i71 - i81
Main Authors:	van ‘t Noordende, Anna T., Kuiper, Heleen, Ramos, Alberto N., Mieras, Liesbeth F., Barbosa, Jaqueline C., Pessoa, Sarah M. F., Souza, Eliana A., Fernandes, Thayse A., Hinders, Duane C., Praciano, Margarida M. A., van Brakel, Wim H.
Format:	Journal Article
Language:	English
Published:	England Oxford University Press 01-03-2016
Subjects:	Brazil Chagas Disease - complications Comorbidity Cross-Sectional Studies Delphi Technique Disability Evaluation Disabled Persons Female Humans Leishmaniasis - complications Leprosy - complications Male Middle Aged Neglected Diseases - complications Quality of Life Schistosomiasis - complications Tropical Medicine Measurement Neglected tropical diseases Disability assessment Morbidity Social participation Quality of life
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Summary:	Background Neglected tropical diseases (NTDs) are a group of often chronic and disabling infectious conditions, closely related to poverty and inequities. While it is estimated that millions of people are affected, accurate and internationally comparable data about NTD-related morbidity and disability are lacking. Therefore we aimed to develop and pilot a toolkit to assess and monitor morbidity and disability across NTDs. Methods A cross-sectional, non-random survey design with a mixed methods approach was used. We conducted a literature review on existing tools to assess and monitor disability, followed by a Delphi study with NTD experts to compile a prototype toolkit. A first-phase validation study was conducted in Northeast Brazil among people with Chagas disease, leishmaniasis, leprosy and schistosomiasis. Results Instruments included were the clinical profile, WHODAS, P-scale, SRQ, WHOQOL-BREF and WHOQOL-DIS. Most questions in the various instruments were readily understood with the exception of the WHOQOL-BREF, where additional explanations and examples were often needed. The respondents were very appreciative of the instruments and found it valuable to have the opportunity to talk about these aspects of their condition. Conclusions Our findings support the acceptability and relevance of five of the six instruments tested and the concept of a cross-NTD toolkit.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	1876-3413 1876-3405
DOI:	10.1093/inthealth/ihw006