Indian Council of Medical Research (ICMR)-Sickle Cell Disease (SCD) Stigma Scale for India (ISSSI): A Protocol for Scale Development.

Abstract

Sickle cell disease (SCD) is a genetic blood disorder presenting a substantial public health challenge. India, holding the second-highest prevalence globally, exhibits diverse clinical manifestations. The recently launched National SCD Elimination Mission (NSEM) in India has contributed to an increased identification of cases. The national program should extend its services beyond screening and clinical management. The outcome of the disease is influenced by a multitude of factors impacting healthcare utilization, with stigma emerging as a major influencer. Addressing stigma at the right time is crucial to comprehensive disease care. Understanding and quantifying the type and level of stigma in the ecosystem are fundamental steps toward tackling this pressing issue, necessitating the development of a scale. The existing three scales developed and utilized in African and American contexts may not be suitable for the Indian SCD community due to phenotypic, socio-cultural, and contextual variations. Therefore, developing, modifying, and creating a locally applicable scale is imperative. This protocol paper outlines the process of developing, refining, and evaluating the Indian Council of Medical Research (ICMR)-SCD Stigma Scale for India (ISSSI), which will be developed by Indian researchers led by the ICMR.