Sickle Cell Disease-Related Stigma: Quantitative Assessment From India
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2025
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Abstract
This multisite cross-sectional study quantitatively assessed stigma related to sickle cell disease (SCD) in India using the Indian
Council of Medical Research-SCD Stigma Scale for India among 208 adult patients and 184 caregivers. Approximately 27% of
patients and 41% of caregivers reported severe or very severe stigma. ‘Familial & reproductive’, ‘illness burden’ and ‘perceived
blame & social judgement’ stigma domains contributed significantly. Ordinal logistic regression analysis identified pain episodes
in patients (AOR = 1.199, p = 0.013) and caregiver gender (AOR = 0.300, p = 0.016) and income (AOR = 0.999, p = 0.048) as
significant factors associated with stigma severity. The findings underscore a substantial psychosocial burden and highlight the
need for culturally grounded, multilevel interventions integrated into SCD care programs to address stigma comprehensively.
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Babu, B. V., Sharma, Y., Sridevi, P., Surti, S. B., Bal, M., Bhat, D., Sarmah, J., Ranjit, M., & Jena, R. K. (2025). Sickle cell disease-related stigma: Quantitative assessment from India. Pediatric Blood Cancer, Advance online publication. https://doi.org/10.1002/pbc.32116