title: Towards a toolkit for cross-neglected tropical disease morbidity and disability assessment.
abstract: 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.affiliation: Netherlands Leprosy Relief, Amsterdam, Netherlands.
authors.forename: Anna T
authors.initials: AT
authors.lastname: van 't Noordende
authors.affiliation: Netherlands Leprosy Relief, Amsterdam, Netherlands.
authors.forename: Heleen
authors.initials: H
authors.lastname: Kuiper
authors.affiliation: Department of Community Health, School of Medicine, Federal University of Ceará, Fortaleza, Brazil.
authors.forename: Alberto N
authors.initials: AN
authors.lastname: Ramos
authors.affiliation: Netherlands Leprosy Relief, Amsterdam, Netherlands.
authors.forename: Liesbeth F
authors.initials: LF
authors.lastname: Mieras
authors.affiliation: Department of Community Health, School of Medicine, Federal University of Ceará, Fortaleza, Brazil.
authors.forename: Jaqueline C
authors.initials: JC
authors.lastname: Barbosa
authors.affiliation: Department of Community Health, School of Medicine, Federal University of Ceará, Fortaleza, Brazil.
authors.forename: Sarah M F
authors.initials: SM
authors.lastname: Pessoa
authors.affiliation: Department of Community Health, School of Medicine, Federal University of Ceará, Fortaleza, Brazil.
authors.forename: Eliana A
authors.initials: EA
authors.lastname: Souza
authors.affiliation: Department of Community Health, School of Medicine, Federal University of Ceará, Fortaleza, Brazil.
authors.forename: Thayse A
authors.initials: TA
authors.lastname: Fernandes
authors.affiliation: Netherlands Leprosy Relief, Brazil Programme, Fortaleza, Ceará, Brazil.
authors.forename: Duane C
authors.initials: DC
authors.lastname: Hinders
authors.affiliation: Netherlands Leprosy Relief, Brazil Programme, Fortaleza, Ceará, Brazil.
authors.forename: Margarida M A
authors.initials: MM
authors.lastname: Praciano
authors.affiliation: Netherlands Leprosy Relief, Amsterdam, Netherlands Disability Studies, Department of Metamedica, VU Medical Centre Amsterdam, Netherlands w.v.brakel@leprastichting.nl.
authors.forename: Wim H
authors.initials: WH
authors.lastname: van Brakel
mesh_terms: D001938:Brazil; D014355:Chagas Disease / Q000150:complications; D015897:Comorbidity; D003430:Cross-Sectional Studies; D003697:Delphi Technique; D004185:Disability Evaluation; D006233:Persons with Disabilities; D005260:Female; D006801:Humans; D007896:Leishmaniasis / Q000150:complications; D007918:Leprosy / Q000150:complications; D008297:Male; D008875:Middle Aged; D058069:Neglected Diseases / Q000150:complications*; D011788:Quality of Life; D012552:Schistosomiasis / Q000150:complications; D014330:Tropical Medicine
keywords: Disability assessment; Measurement; Morbidity; Neglected tropical diseases; Quality of life; Social participation