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.
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.
Authors: Libardo J Gómez; Robin van Wijk; Lena van Selm; Alberto Rivera; Martha C Barbosa; Sandra Parisi; Wim H van Brakel; Jofren Arevalo; William Quintero; Mitzi Waltz; Karl Philipp Puchner Journal: Trans R Soc Trop Med Hyg Date: 2020-07-01 Impact factor: 2.184
Authors: Louise Claire Hamill; Dominic Haslam; Sofia Abrahamsson; Becks Hill; Ruth Dixon; Heather Burgess; Kimberly Jensen; Susan D'Souza; Elena Schmidt; Philip Downs Journal: Trans R Soc Trop Med Hyg Date: 2019-12-01 Impact factor: 2.184
Authors: Janneke Fischer; Benita Jansen; Alberto Rivera; Libardo J Gómez; Martha C Barbosa; Jorge L Bilbao; José M González; Luis Restrepo; Yesenia Vidal; Ruth M H Peters; Wim H van Brakel Journal: PLoS One Date: 2019-12-03 Impact factor: 3.240