Archive · 24 May 2025
India's First Stigma Scale for Sickle Cell Disease Validated
India now has its first tool to measure the stigma associated with sickle cell disease (SCD).
This new tool, called ISSSI, was created because existing tools weren't right for India's diverse communities.
A recent study confirmed that the ISSSI is effective in understanding the challenges faced by those with SCD and their caregivers.
People with SCD often experience pain and fatigue, and the ISSSI helps understand how stigma affects them.
The study involved several districts across India to capture a range of experiences.
This tool will aid in improving care and research for people with SCD.
India has validated its first stigma scale (ISSSI) for sickle cell disease (SCD).
The ISSSI was developed by the Indian Council of Medical Research (ICMR) to address SCD stigma.
The study validates patient (ISSSI-Pt) and caregiver (ISSSI-Cg) scales of the ISSSI.
The study was conducted in six SCD-endemic districts across India.
The ISSSI will be available to researchers and missions to help address challenges.
- Who
- The ICMR developed the scale, and the study involved Indian SCD patients and caregivers.
- What
- Validation of India's first stigma scale (ISSSI) for sickle cell disease.
- When
- The study results were published this month (May 2024).
- Where
- Six SCD-endemic districts in India were studied.
- Why
- To address the multidimensional aspects of stigma, including familial and reproductive, social disclosure, illness burden, interpersonal, and healthcare interaction challenges, and to improve SCD care and research.
- Country
- India
- Topic
- Sickle cell disease (SCD)
- Scale Name
- ISSSI
- Developer
- ICMR
- Study Locations
- Six districts in India
- Publication Date
- May 2024