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 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.

Persisting leprosy transmission despite increased control measures in an endemic cluster in Brazil: the unfinished agenda.

OBJECTIVE: To provide an evidence base for improvement of leprosy control in Brazil's high transmission areas. DESIGN: We obtained data from municipalities in a major disease cluster from databases for notifiable diseases of four states (Maranhão, Parâ, Tocantins, Piauí), including notifications from 2001 to 2009. Indicators for monitoring and evaluation of leprosy according to the World Health Organization were evaluated with emphasis on the rates of new cases presenting grade-2 disabilities and among children < 15 years of age, indicating late diagnosis and active transmission, respectively. RESULTS: A total of 82,463 leprosy cases were detected in the area (mean annual case detection rate: 95.9/100,000; RR = 4.56 as compared to the rest of Brazil; 95% CI: 4.45-4.66, P < 0.0001). There was a steady decrease of detection rates in the study period, from 100.8 to 75.6/100,000 inhabitants. In children <15 years of age, 9,009 cases of leprosy were detected (28.40/100,000), significantly more than in the rest of Brazil (RR = 5.80; 95% CI: 5.39-6.25, P < 0.0001). New cases with grade-2 disabilities/100,000 population maintained a stable trend at a high level (4.43 cluster vs. 1.28 rest of country; RR = 3.46; 95% CI: 3.11-3.84, P < 0.0001), whereas the proportion of new cases with grade-2 was slightly lower than the country's average (5.51% vs. 6.75%; RR = 0.84; 95% CI: 0.81-0.86, P < 0.0001). CONCLUSIONS: Despite recently improved leprosy control measures, there is still major active transmission and late diagnosis in the cluster. Further specific actions are needed to improve early case detection and prompt treatment with the aim to reduce disease burden in the population, considering social inequities.