Socioeconomic health and impact of sickle cell disease and vaso-occlusive crises in India: results from B-VOCAL study

Background Sickle cell disease (SCD) with vaso-occlusive pain crisis (VOC) has a major impact on healthcare resource utilisation and poses a significant financial burden for the patients. This study examines the economic implications of managing VOC in individuals with SCD in India, from the perspec...

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Main Authors: Dipty Jain, Ravindra Kumar, Nandakumar Menon, Disha Shetty, Tulika Seth, Shashank Udupi, Suman Jain, Seema Bhatwadekar, Rabindra Jena, Bharat Parmar, Anil Goel, Ashvin Vasava, Anupam Dutta, Priyanka Samal, Riya Ballikar, Deepa Bhat, Tuphan Kanti Dolai, Jina Bhattacharyya, Manish Mistry, Shomik Ray
Format: Article
Language:English
Published: BMJ Publishing Group 2025-05-01
Series:BMJ Global Health
Online Access:https://gh.bmj.com/content/10/5/e017887.full
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author Dipty Jain
Ravindra Kumar
Nandakumar Menon
Disha Shetty
Tulika Seth
Shashank Udupi
Suman Jain
Seema Bhatwadekar
Rabindra Jena
Bharat Parmar
Anil Goel
Ashvin Vasava
Anupam Dutta
Priyanka Samal
Riya Ballikar
Deepa Bhat
Tuphan Kanti Dolai
Jina Bhattacharyya
Manish Mistry
Shomik Ray
author_facet Dipty Jain
Ravindra Kumar
Nandakumar Menon
Disha Shetty
Tulika Seth
Shashank Udupi
Suman Jain
Seema Bhatwadekar
Rabindra Jena
Bharat Parmar
Anil Goel
Ashvin Vasava
Anupam Dutta
Priyanka Samal
Riya Ballikar
Deepa Bhat
Tuphan Kanti Dolai
Jina Bhattacharyya
Manish Mistry
Shomik Ray
author_sort Dipty Jain
collection DOAJ
description Background Sickle cell disease (SCD) with vaso-occlusive pain crisis (VOC) has a major impact on healthcare resource utilisation and poses a significant financial burden for the patients. This study examines the economic implications of managing VOC in individuals with SCD in India, from the perspectives of patients, healthcare system and society.Methods This cross-sectional, observational study included 1000 patients with SCD across 14 centres enrolled from November 2021 to June 2022. Data were collected systematically using a structured electronic case record form. Employing a cost-of-illness approach, the study assessed the economic impact of SCD and VOC management, including assessing patient/caregiver costs, healthcare provider costs and societal burdens extrapolated to the larger SCD population in India.Findings Patients incurred substantial out-of-pocket expenses, with a median (IQR) annual expenditure of INR 22 080/US$267 (IQR: INR 36 990/US$447.7), representing 14.65% (26.53) of their annual household income. Overall, catastrophic healthcare expenditure (CHE) for total annual average SCD care with VOC management was experienced by 624 patients (62.40%). Moreover, 334 patients (33.4%) experienced CHE of >25% of the annual household income. Patients with SCD with VOC had significantly higher median annual healthcare expenditures and used a higher median percentage of their yearly household income on healthcare compared with those without VOC (19.82% vs 6.08%; p<0.001). Cost incurred by healthcare providers for VOC management in different healthcare facilities (outpatient department/emergency department/intensive care unit) was similar across different reimbursed facilities (government tertiary care hospitals, non-governmental organisation-operated healthcare centres and government-subsidised healthcare setups). The estimated societal burden for VOC management in 1 year for 1000 patients visiting different healthcare facilities was around INR 35 119 074 (~US$0.42 million).Interpretation These findings highlight the considerable economic strain on both patients and healthcare providers in SCD and VOC management, which is similar to the other non-communicable diseases emphasising the urgent need for targeted interventions to improve financial hardships among patients.Funding The study was funded by Novartis Healthcare Private Limited.
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spelling doaj-art-bd0d536d2ee84ea4813821da3ea3b17a2025-07-03T00:55:10ZengBMJ Publishing GroupBMJ Global Health2059-79082025-05-0110510.1136/bmjgh-2024-017887Socioeconomic health and impact of sickle cell disease and vaso-occlusive crises in India: results from B-VOCAL studyDipty Jain0Ravindra Kumar1Nandakumar Menon2Disha Shetty3Tulika Seth4Shashank Udupi5Suman Jain6Seema Bhatwadekar7Rabindra Jena8Bharat Parmar9Anil Goel10Ashvin Vasava11Anupam Dutta12Priyanka Samal13Riya Ballikar14Deepa Bhat15Tuphan Kanti Dolai16Jina Bhattacharyya17Manish Mistry18Shomik Ray19Arihant Education and Research Foundation, Nagpur, Maharashtra, IndiaGenetics, ICMR-National Institute of Research in Tribal Health, Jabalpur, Madhya Pradesh, IndiaGudalur Adivasi Hospital, Nilgiris, Tamilnadu, IndiaNovartis Healthcare Pvt Ltd, Mumbai, IndiaAll India Institute of Medical Sciences, New Delhi, Delhi, IndiaNovartis Healthcare Pvt Ltd, Hyderabad, Telangana, IndiaThalassemia and Sickle Cell Society, Hyderabad, Telangana, IndiaHaemato Oncology Care Centre, Vadodara, Gujarat, IndiaSCB Medical College & Hospital, Cuttack, Odisha, IndiaZydus Medical College and Hospital, Dahod, Gujarat, IndiaAIIMS Raipur, Raipur, Chhattisgarh, IndiaSurat Civil Hospital Surat, Civil Hospital Ahmedabad, Ahmedabad, Gujarat, IndiaAssam Medical College, Dibrugarh, Assam, IndiaInstitute of Medical Sciences and SUM Hospital - Campus I, Bhubaneswar, IndiaKingsway Hospitals, Nagpur, IndiaJSS Medical College, Mysore, Karnataka, IndiaNilratan Sircar Medical College, Kolkata, IndiaGauhati Medical College and Hospital, Guwahati, IndiaNovartis Healthcare Pvt Ltd, Mumbai, IndiaIndian Institutes of Public Health, New Delhi, Delhi, IndiaBackground Sickle cell disease (SCD) with vaso-occlusive pain crisis (VOC) has a major impact on healthcare resource utilisation and poses a significant financial burden for the patients. This study examines the economic implications of managing VOC in individuals with SCD in India, from the perspectives of patients, healthcare system and society.Methods This cross-sectional, observational study included 1000 patients with SCD across 14 centres enrolled from November 2021 to June 2022. Data were collected systematically using a structured electronic case record form. Employing a cost-of-illness approach, the study assessed the economic impact of SCD and VOC management, including assessing patient/caregiver costs, healthcare provider costs and societal burdens extrapolated to the larger SCD population in India.Findings Patients incurred substantial out-of-pocket expenses, with a median (IQR) annual expenditure of INR 22 080/US$267 (IQR: INR 36 990/US$447.7), representing 14.65% (26.53) of their annual household income. Overall, catastrophic healthcare expenditure (CHE) for total annual average SCD care with VOC management was experienced by 624 patients (62.40%). Moreover, 334 patients (33.4%) experienced CHE of >25% of the annual household income. Patients with SCD with VOC had significantly higher median annual healthcare expenditures and used a higher median percentage of their yearly household income on healthcare compared with those without VOC (19.82% vs 6.08%; p<0.001). Cost incurred by healthcare providers for VOC management in different healthcare facilities (outpatient department/emergency department/intensive care unit) was similar across different reimbursed facilities (government tertiary care hospitals, non-governmental organisation-operated healthcare centres and government-subsidised healthcare setups). The estimated societal burden for VOC management in 1 year for 1000 patients visiting different healthcare facilities was around INR 35 119 074 (~US$0.42 million).Interpretation These findings highlight the considerable economic strain on both patients and healthcare providers in SCD and VOC management, which is similar to the other non-communicable diseases emphasising the urgent need for targeted interventions to improve financial hardships among patients.Funding The study was funded by Novartis Healthcare Private Limited.https://gh.bmj.com/content/10/5/e017887.full
spellingShingle Dipty Jain
Ravindra Kumar
Nandakumar Menon
Disha Shetty
Tulika Seth
Shashank Udupi
Suman Jain
Seema Bhatwadekar
Rabindra Jena
Bharat Parmar
Anil Goel
Ashvin Vasava
Anupam Dutta
Priyanka Samal
Riya Ballikar
Deepa Bhat
Tuphan Kanti Dolai
Jina Bhattacharyya
Manish Mistry
Shomik Ray
Socioeconomic health and impact of sickle cell disease and vaso-occlusive crises in India: results from B-VOCAL study
BMJ Global Health
title Socioeconomic health and impact of sickle cell disease and vaso-occlusive crises in India: results from B-VOCAL study
title_full Socioeconomic health and impact of sickle cell disease and vaso-occlusive crises in India: results from B-VOCAL study
title_fullStr Socioeconomic health and impact of sickle cell disease and vaso-occlusive crises in India: results from B-VOCAL study
title_full_unstemmed Socioeconomic health and impact of sickle cell disease and vaso-occlusive crises in India: results from B-VOCAL study
title_short Socioeconomic health and impact of sickle cell disease and vaso-occlusive crises in India: results from B-VOCAL study
title_sort socioeconomic health and impact of sickle cell disease and vaso occlusive crises in india results from b vocal study
url https://gh.bmj.com/content/10/5/e017887.full
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