India’s first ICMR-SCD Stigma Scale for sickle cell disease

The Indian Council of Medical Research (ICMR) has developed the first-ever standardized stigma scale in India specifically for individuals and caregivers affected by Sickle Cell Disease (SCD):

• ISSSI-Pt – for patients
• ISSSI-Cg – for caregivers

These tools have been validated through research published in The Lancet Regional Health – South-East Asia, making it a credible and scientifically-backed measure.

Global and National Context

• India has the second-highest burden of SCD in the world, after Sub-Saharan Africa.
• The disease is particularly prevalent in India’s tribal communities, where healthcare infrastructure and awareness are limited.
• Sickle Cell Disease is a genetic blood disorder caused by the inheritance of two mutated β-globin genes, leading to abnormal sickle-shaped red blood cells.

What the ISSSI Measures

The ISSSI explores five key domains of stigma:

• Familial and reproductive stigma – Shame or blame within family, concerns over marriage and reproduction.
• Social disclosure – Difficulty revealing the disease status to others.
• Illness burden – Emotional and physical toll of living with SCD.
• Interpersonal stigma – Discrimination or negative treatment by peers or community.
• Healthcare interaction stigma – Bias or poor treatment by healthcare providers.

(Source: The Hindu)