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Cross-cultural validation of the Participation Scale for people affected by neglected tropical diseases in Niassaprovince of Mozambique.


Neglected tropical diseases (NTDs) are diseases that affect more than a billion people globally. These diseases are caused by a diverse group of pathogens: bacteria, viruses, protozoa and helminths. NTDs occur mainly in rural areas and poor urban areas of low and middle-income countries and currently affect people in 149 countries. Many NTDs share common features, for example, they mostly affect people among the poorest of society, have a major impact on mortality and morbidity worldwide and often cause disabilities and disfigurements. These disabilities and disfigurements often lead to stigma and discrimination of people affected with NTDs. People living in Mozambique are also highly affected by NTDs. Mozambique has the fourth highest prevalence of Schistosomiasis (13 million people affected) in the world. Furthermore, the registered prevalence of leprosy in the beginning of 2012 was estimated at 1,042. However, there is an urgent need for more data on disability and the number of people affected by NTDs, since data on morbidity and mortality are underrated because long-term disabilities caused by NTDs were not incorporated in the measurements. In order to gather more data on morbidity and disability caused by NTDs, Noordende et al. developed a toolkit to assess and monitor morbidity and disability. Because many NTDs share similarities with regard to their disabling aspects, a cross-NTD Morbidity and Disability (NMD) toolkit was developed in collaboration with an expert panel. The NMD toolkit consists of several instruments based on the conceptual model of the WHO International Classification of Functioning, Disability and Health (ICF). However, the toolkit has only been tested the in the context of Brazil. To establish an evidence base for the cultural validity of the instruments in the NMD toolkit, additional cross-cultural validation studies in other countries and among other NTDs are needed. The process of validation of questionnaires in a different country than the originating ensures that the questionnaire is adequate for the usage in both countries (cross-cultural). By taking the Universalist approach, the cultural validity of the P-scale was assessed.

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