Bhat Deepa, Sharma Yogita, Sridevi Parikipandla, Surti Shaily B, Sarmah Jatin, Ranjit Manoranjan, Bal Madhusmita, Babu Bontha V
Department of Anatomy, JSS Medical College, JSS Academy of Higher Education and Research, Mysore, India.
Division of Socio-Behavioural, Health Systems & Implementation Research, Indian Council of Medical Research, New Delhi, India.
J Racial Ethn Health Disparities. 2024 Nov 6. doi: 10.1007/s40615-024-02228-1.
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.
镰状细胞病（SCD）是一种遗传性血液疾病，对公共卫生构成重大挑战。印度的患病率在全球排名第二，临床表现多样。印度最近启动的全国消除镰状细胞病任务（NSEM）促使病例识别有所增加。国家项目应将服务范围扩大到筛查和临床管理之外。该疾病的结果受到多种影响医疗保健利用的因素的影响，其中耻辱感是一个主要影响因素。及时解决耻辱感对于全面的疾病护理至关重要。了解和量化生态系统中耻辱感的类型和程度是解决这一紧迫问题的基本步骤，因此需要制定一个量表。由于表型、社会文化和背景差异，在非洲和美国背景下开发和使用的现有三个量表可能不适用于印度的SCD群体。因此，开发、修改并创建一个适用于当地的量表势在必行。本方案文件概述了由印度医学研究理事会（ICMR）领导的印度研究人员开发、完善和评估印度医学研究理事会 - 印度镰状细胞病耻辱感量表（ISSSI）的过程。
