Scientists develop, validate scale to measure stigma in patients with sickle cell disease
sickle cell disease
and their caregivers.
Described in a paper in
The Lancet Regional Health Southeast Asia
journal, the '
ICMR-SCD Stigma Scale for India
' or ISSSI is the first such tool in the country and fourth in the world, available in clinical and research settings.
India accounts for the second-highest prevalence of sickle cell disease in the world, following sub-Saharan Africa.
The condition is a genetic disorder in which red blood cells are mis-shaped, affecting their ability to deliver oxygen.
The team, including researchers from the Indian Council for Medical Research (ICMR), said that despite the huge burden of sickle cell disease and associated stigma in India, not much research has been done, and no stigma measurement tool is available.
ISSSI characterises the nature of stigma under these categories -- perceived stigma, internalised stigma, experienced stigma and disclosure stigma.
The team's study developed and validated the ISSSI for patients and caregivers across six districts where sickle cell disease is endemic, including Alluri Seetharama Raju in Andhra Pradesh and Anuppur in Madhya Pradesh.
Findings highlight ISSSI's
psychometric robustness
and utility in clinical and research settings, the researchers said.
"The ISSSI (captures) multidimensional aspects of stigma, including familial and reproductive, social disclosure, illness burden, interpersonal, and healthcare interaction challenges," the authors wrote.
Future studies should apply the ISSSI scale across diverse cultural and linguistic contexts to improve its generalisability and impact, they said.
People with sickle cell disease often suffer from episodes of severe pain, chronic fatigue, swelling, infections, and potential organ damage, significantly impacting their quality of life.
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