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

• 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
• DOI: 10.1093/inthealth/ihw006
• EISSN: 1876-3405
• ISSN: 1876-3413

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.