Validation of the 5-Question Stigma Indicator as part of the neglected tropical diseases (NTD) toolkit to assess and monitor NTD-related morbidity and disability in Uttar Pradesh, India.

PURPOSE: India has the highest prevalence of leprosy-registered cases in the world. Leprosy is often associated with high levels of stigma, which negatively effects the quality of life of leprosy-affected persons. Instruments are needed to measure stigma and to, monitor and evaluate stigma reduction activities. We conducted a validation study of such an instrument, namely the ‘5-Question-Stigma-Indicator Community Stigma (5-QSI-CS)’ from the community perspective in Chandauli District, Uttar Pradesh, India.
METHODS: Cultural validity was tested by assessing the conceptual, semantic, item, operational and measurement equivalence of the 5-QSI-CS. A qualitative exploratory study using focus groups was performed to increase our understanding of the concept of stigma in Chandauli District. A process of translations, discussions, trainings and pilot studies followed. A total sample of 194 community members were selected through convenience sampling. From them, 60 repeated measures were obtained and 50 parallel measures with the Social Distance Scale (SDS) to assess the psychometric measurement properties. RESULTS: The internal consistency measured with Cronbach’s alpha was only moderate with a score of 0.52. The low alpha is to be caused by the short response scales and limited number of items in the instrument. Construct validity for both predefined hypothesis for the 5-QSI-CS as SDS was confirmed with significant Spearman’s correlation coefficients of 0.50. Reproducibility of the QSI measured with kappa-values scored an overall kappa of 0.65, with items ranging from 0.75-1. A ceiling effect of 22% of the total sample size was found, meaning that the instrument has limited sensitivity in distinguishing between high and very high levels of stigma.
CONCLUSION: Our findings suggest that the culturally adapted version of the 5-QSI-CS in Hindi has adequate validity in terms of conceptual, semantic, item, operational and measurement equivalence. However, our results are not generalizable for the general community or other NTDs. Future research will be necessary to further validate the 5-QSI-CS in order for it to be widely available as tool to measure and monitor stigma.