Neglected tropical diseases (NTD) morbidity and disability toolkit validation: A cross-sectional validation study of the EMIC-AP stigma scale for affected persons and the WHOQOL-DIS scale in Papua, Indonesia.

Background: There is a lack of information about the burden of neglected tropical diseases (NTDs) in terms of morbidity and disability. Therefore, there is a need for agreed instruments that can provide this information. This study is a first phase validation study of the EMIC-AP and the WHOQOL-DIS instruments conducted in Papua, Indonesia. Leprosy and Lymphatic filariasis are common NTDs in Papua. The research question was: “How valid are the EMIC-AP and the WHOQOL-DIS of the NMD toolkit among people affected by the NTDs leprosy or lymphatic filariasis living in Papua, Indonesia?” Methodology/Principal Findings: Data were gathered using translated interviewadministrated versions of the questionnaires. The sample included participants with leprosy (n ¼ 16) and lymphatic filariasis (n ¼ 18) experiencing disabling consequences from their NTD. The study focused on item equivalence (relevance and acceptability), semantic equivalence (understanding and meaning) and operational equivalence (format of administration and questions, and suitability of response scales). Testing of the item equivalence showed that 94% thought the questions of WHOQOL-DIS were relevant and 90% felt comfortable with the topics. Concerning the EMIC-AP, 93% thought the questions relevant, and 90% felt comfortable. Semantic equivalence was more problematic with 51% and 23% having difficulties in understanding the WHOQOL-DIS and the EMIC-AP, respectively. Seventy-three percent was positive about the format of the EMIC-AP, while only 58% was positive about the WHOQOL-DIS format. Conclusion: The item equivalence was good for both the WHOQOL-DIS and EMIC-AP, and the operational equivalence showed room for improvement for the WHOQOL-DIS. The semantic equivalence was relatively poor. This was especially true for the WHOQOL-DIS. The main reason for this is that there are over a 250 different languages in the province of Papua. With minor adjustments, it is likely that the EMIC-AP can be used under the condition that the participants speak sufficient Bahasa. The WHOQOL-DIS does not appear suitable for use with this population. Author Summary This study tested two instruments that measure stigma (EMICAP) and quality of life (WHOQOL-DIS) among people affected by leprosy or lymphatic filariasis in Papua, Indonesia. The interviews comprised questions of both instruments and additional questions to get the participants opinion about the instruments. The focus of this study was on whether the participants understood the questions, whether they were relevant and acceptable and if the design of the questionnaires were clear. Using the answers to the additional questions, we could check whether the translations of the instruments were applicable for persons affected by NTDs in Papua. Results showed that the WHOQOL-DIS was not considered suitable for use with NTD-affected people in Papua. In contrast, the EMIC-AP can be used in Papua after some minor adjustments and if participants are fluent in Bahasa Indonesia.