logo
Scientists develop, validate scale to measure stigma in patients with sickle cell disease

Scientists develop, validate scale to measure stigma in patients with sickle cell disease

Time of India26-05-2025
New Delhi: Researchers in India have developed and validated a scale to measure stigma in a patient suffering from
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.
Orange background

Try Our AI Features

Explore what Daily8 AI can do for you:

Comments

No comments yet...

Related Articles

India's first phase 3 dengue vaccine trial hits 50% enrolment mark, early data shows no safety concerns
India's first phase 3 dengue vaccine trial hits 50% enrolment mark, early data shows no safety concerns

Indian Express

time8 minutes ago

  • Indian Express

India's first phase 3 dengue vaccine trial hits 50% enrolment mark, early data shows no safety concerns

India has reached the 50 per cent enrolment mark in its first phase 3 clinical trial for the indigenous tetravalent dengue vaccine, DengiAll, with over 7,000 participants randomised across 20 trial sites. Initial results show no safety concerns for the one-shot vaccine for the mosquito-borne viral disease, according to researchers. Developed by Panacea Biotec Limited under a licensing agreement with the National Institutes of Health (NIH), the primary United States federal agency for biomedical research, DengiAll targets all four dengue virus subtypes and has shown promising results in earlier clinical trials. The study, coordinated by the Indian Council of Medical Research (ICMR), seeks to recruit 10,355 volunteers aged 18-60, with follow-ups extending for two years post-vaccination. Participants will receive either the vaccine or a placebo. The trial has been approved by the Drug Controller General of India and aims to conclude enrolment by October. DengiAll has a weakened form of all four dengue virus subtypes and the same virus composition as the vaccine developed by NIH, except for the inactive ingredients. The NIH also evaluated the vaccine in the US and the results were found to be promising in the early-stage clinical studies. A Phase I/II clinical trial conducted in India among humans revealed a balanced and robust immune response across all four dengue virus types. The vaccine was also found to be safe and well-tolerated, in the trial. Multiple ICMR institutes are involved in the study to evaluate the efficacy, immunogenicity, and safety of DengiAll. The ICMR-National Institute of Translational Virology (NITVAR) and AIDS Research (formerly ICMR-NARI) is responsible for overall trial coordination and has recently been identified as a designated site for participant enrollment. Dr Sheela Godbole, director, ICMR-NITVAR and national principal investigator of the trial, told The Indian Express that follow-up will be completed in the last quarter of 2027. According to Dr Abhijit Kadam, national co-principal investigator, healthy adults from the 18-60 years age group are being screened after obtaining informed consent and subsequently randomised after assessing their eligibility as per the trial protocol. Participants are being randomised to receive either the dengue vaccine or a placebo (2:1) and will be followed up for two years,' he added. Dr Suchit Kamble, principal investigator for the NITVAR clinical trial site, explained further that symptoms of dengue infection are fever, headache, muscle, joint pains, rash, nausea and vomiting. 'Some of the infections could result in severe manifestations like bleeding and shock (sudden drop in blood flow) and may threaten the life of the patient. Currently, there is no specific treatment available for dengue fever, and there is only supportive treatment like fever management and adequate fluid intake. Prevention and control of dengue depend on mosquito control measures,' he said. The 20 trial sites are located in the following cities: Chennai, Pune (with two sites), Mysuru, Hyderabad, Puducherry, Kochi, Jodhpur, Ranchi, Kolkata, Aligarh, Patna, Rohtak, Ludhiana, Bengaluru, New Delhi, Bhubaneswar, Rishikesh, Guwahati, and Faridabad. The research teams at these sites come from well-known medical institutions, including three affiliated with ICMR. Dengue fever is one of the top 10 threats to global health, according to the World Health Organisation (WHO). India accounts for a large fraction of global dengue cases, and the disease is endemic (regularly occurring within an area or community) in certain regions. Dengue causes frequent outbreaks, often coinciding with the monsoon season. According to a recent report in The Lancet Regional Health-Southeast Asia, approximately 100-400 million infections occur globally each year. Data from the National Centre for Vector Borne Diseases Control, Ministry of Health and Family Welfare, shows that till March this year, around 12,043 dengue cases were reported, while 2.3 lakh cases and 297 deaths were reported in 2024. Over the years, scientists have been working towards a safe and effective vaccine, as current prevention methods focus on mosquito control, which can be difficult to implement in densely populated areas. Anuradha Mascarenhas is a journalist with The Indian Express and is based in Pune. A senior editor, Anuradha writes on health, research developments in the field of science and environment and takes keen interest in covering women's issues. With a career spanning over 25 years, Anuradha has also led teams and often coordinated the edition. ... Read More

Centre denies COVID-19 vaccine link to sudden deaths, attributes lifestyle, health conditions
Centre denies COVID-19 vaccine link to sudden deaths, attributes lifestyle, health conditions

New Indian Express

timean hour ago

  • New Indian Express

Centre denies COVID-19 vaccine link to sudden deaths, attributes lifestyle, health conditions

NEW DELHI: The Centre on Wednesday denied any direct link between COVID-19 vaccination and reports of sudden deaths in the country, asserting instead that lifestyle and pre-existing health conditions were the key contributing factors. The government's clarification came a day after Karnataka Chief Minister Siddaramaiah alleged that an increase in heart attack-related deaths in Hassan district could be due to the 'hasty approval and distribution' of COVID-19 vaccines to the public. Quoting extensive studies by the Indian Council of Medical Research (ICMR) and All India Institute of Medical Sciences (AIIMS), the Union Health Ministry said the matter of sudden unexplained deaths has been thoroughly investigated by multiple agencies across India. 'These studies have conclusively established that there is no direct link between COVID-19 vaccination and the reports of sudden deaths in the country,' the ministry said in a statement. Instead, the statement attributed such deaths to factors like lifestyle and pre-existing conditions. 'Studies by the Indian Council of Medical Research (ICMR) and National Centre for Disease Control (NCDC) affirm that COVID-19 vaccines in India are safe and effective, with extremely rare instances of serious side effects. Sudden cardiac deaths can result from a wide range of factors, including genetics, lifestyle, pre-existing conditions, and post-COVID complications,' the statement added. The ICMR and NCDC have collaborated to investigate the causes of sudden unexplained deaths, particularly among young adults aged between 18 and 45.

Covid vaccine safe for heart, says Health Ministry citing AIIMS, ICMR studies
Covid vaccine safe for heart, says Health Ministry citing AIIMS, ICMR studies

United News of India

time2 hours ago

  • United News of India

Covid vaccine safe for heart, says Health Ministry citing AIIMS, ICMR studies

New Delhi, July 2 (UNI) A day after Karnataka Chief Minister Siddaramaiah linked heart-related deaths in Hassan district to Covid vaccine, the Union Health Ministry today rebut his claims saying that extensive studies by ICMR and AIIMS have conclusively found no such connections. Siddaramaiah had on Tuesday said "hasty approval and distribution" of the Covid vaccine to the public could also be a reason for these deaths and urged everyone to visit the nearest health centre immediately for a check-up if they have symptoms such as chest pain or difficulty breathing, and not to ignore these signs. However, the Ministry trashed his observation, saying that the matter of sudden unexplained deaths has been investigated through several agencies in the country and these studies have conclusively established that there is no direct link between Covid-19 vaccination and reports of sudden deaths. The Ministry cited studies by the ICMR and National Centre for Disease Control (NCDC) saying that they have affirmed that Covid-19 vaccines in India are safe and effective, with extremely rare instances of serious side effects. Sudden cardiac deaths can result from a wide range of factors, including genetics, lifestyle, pre-existing conditions, and post-Covid complications, the Ministry said in a statement. The ICMR and NCDC have been working together to understand the causes behind sudden unexplained deaths, especially in young adults between the ages of 18 and 45 years. To explore this, two complementary studies were undertaken using different research approaches -- one based on past data and another involving real-time investigation. The first study was conducted by ICMR's National Institute of Epidemiology (NIE) was titled "Factors associated with unexplained sudden deaths among adults aged 18-45 years in India - a multi-centric matched case control study," from May to August 2023 across 47 tertiary care hospitals in 19 states and Union territories, the statement said. It looked at individuals who appeared to be healthy but died suddenly between October 2021 and March 2023. The findings have conclusively showed that Covid-19 vaccination does not increase the risk of unexplained sudden deaths in young adults. The second study titled "Establishing the cause in sudden unexplained deaths in young" is currently being conducted by the AIIMS, Delhi. This is a prospective study aimed at determining the common causes of sudden deaths in young adults. 'Early analysis of data from the study indicates that heart attacks or myocardial infarction (MI) continue to be the leading cause of sudden death in this age group,' the statement said. Importantly, no major changes in the pattern of causes have been observed when compared with previous years. In majority of the unexplained death cases, genetic mutations have been identified as a possible cause of these deaths. The final results will be shared once the study is complete. Together, these two studies offer a more comprehensive understanding of sudden unexplained deaths in young adults in India. It has also been found that Covid-19 vaccination does not appear to increase the risk, whereas, the role of underlying health issues, genetic predisposition and risky lifestyle choices does play a role in unexplained sudden deaths, the statement said. Without naming the State and Karnataka Chief Minister's statement on doubting vaccine's efficiency, the statement said 'Scientific experts have reiterated that statements linking COVID vaccination to sudden deaths are false and misleading, and are not supported by scientific consensus. 'Speculative claims without conclusive evidence risk undermining public confidence in vaccines, which have played a crucial role in saving millions of lives during the pandemic. Such unfounded reports and claims could strongly contribute to vaccine hesitancy in the country, thereby adversely impacting public health.' The Karnataka chief minister had said more than 20 people have died due to heart attacks in the past month alone in just one district of Hassan. In a post on X, he wrote: "The government is taking this matter very seriously. To identify the exact cause of these series of deaths and to find solutions, a committee of experts has been formed under the leadership of Dr Ravindranath, Director of Jayadeva Institute of Cardiovascular Sciences and Research, and they have been instructed to submit a study report within 10 days.' UNI AJ GNK 1310

DOWNLOAD THE APP

Get Started Now: Download the App

Ready to dive into a world of global content with local flavor? Download Daily8 app today from your preferred app store and start exploring.
app-storeplay-store