Burden of vaso‐occlusive crisis, its management and impact on quality of life of Indian sickle cell disease patients

Sickle cell disease (SCD) with vaso-occlusive pain crisis (VOC) significantly impacts patient well-being and often results in extensive healthcare resource utilization. This study assessed the VOC burden, its management and its impact on patients' quality of life (QoL). A cross-sectional observational study was conducted between November 2021 and June 2022, including 1000 SCD patients from high-prevalence states in India. Data on demographics, clinical characteristics, VOC severity, management and QoL were collected. The study revealed that 33.5% of patients reported at least one VOC episode during the study period. In the year prior to their enrolment, 836 (83.60%) patients reported at least one VOC episode, with an equal proportion of 407/487 (83.6%) adults and 429/513 (83.6%) paediatric patients, reducing their QoL across all domains compared to patients without VOC. Of these, 469/1000 patients (46.9%) experienced ≥3 VOC episodes. Additionally, 764/1000 (76.40%) patients managed their VOCs at healthcare facilities, with 501/1000 (50.1%) requiring inpatient admissions. Further, 71.80% of patients received Hydroxyurea (HU) therapy. The study depicts the severity of the Arab-Indian haplotype in Indian SCD patients visiting healthcare settings based on high VOC burden. This highlights the urgent need for better management strategies and resource allocation for these patients.

Authors

Institutions

Publication Details

Journal
British Journal of Haematology
Published
2024-10-28
DOI
https://doi.org/10.1111/bjh.19829
Citations
7
Primary Topic
Hemoglobinopathies and Related Disorders
Type
article
Field-Weighted Citation Impact
3.07
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

Burden of vaso‐occlusive crisis, its management and impact on quality of life of Indian sickle cell disease patients

Tuphan Kanti Dolai, Shashank Udupi, Bharat Parmar, Disha Shetty et al.
7 citations
British Journal of Haematology
Hemoglobinopathies and Related Disorders
3.07
article

Burden of vaso‐occlusive crisis, its management and impact on quality of life of Indian sickle cell disease patients

Tuphan Kanti Dolai, Shashank Udupi, Bharat Parmar, Disha Shetty, Deepa Bhat, Suman Jain, Anil Kumar Goel, Anupam Dutta, Seema S. Bhatwadekar, Tulika Seth, Dipty Jain, Shomik Ray, Ashvin Vasava, Ravindra Kumar, Riya Ballikar, Rabindra Kumar Jena, Priyanka Samal, Nandakumar Menon, Manish Mistry, Jina Bhattacharyya
article en
7 citations

Abstract

Sickle cell disease (SCD) with vaso-occlusive pain crisis (VOC) significantly impacts patient well-being and often results in extensive healthcare resource utilization. This study assessed the VOC burden, its management and its impact on patients' quality of life (QoL). A cross-sectional observational study was conducted between November 2021 and June 2022, including 1000 SCD patients from high-prevalence states in India. Data on demographics, clinical characteristics, VOC severity, management and QoL were collected. The study revealed that 33.5% of patients reported at least one VOC episode during the study period. In the year prior to their enrolment, 836 (83.60%) patients reported at least one VOC episode, with an equal proportion of 407/487 (83.6%) adults and 429/513 (83.6%) paediatric patients, reducing their QoL across all domains compared to patients without VOC. Of these, 469/1000 patients (46.9%) experienced ≥3 VOC episodes. Additionally, 764/1000 (76.40%) patients managed their VOCs at healthcare facilities, with 501/1000 (50.1%) requiring inpatient admissions. Further, 71.80% of patients received Hydroxyurea (HU) therapy. The study depicts the severity of the Arab-Indian haplotype in Indian SCD patients visiting healthcare settings based on high VOC burden. This highlights the urgent need for better management strategies and resource allocation for these patients.

British Journal of HaematologyVol. 206(1)
All India Institute of Medical Sciences Raipur (IN), Gauhati Medical College and Hospital (IN), Nil Ratan Sircar Medical College and Hospital (IN), Sriram Chandra Bhanja Medical College Hospital (IN), Midas Multispeciality Hospital (IN), Novartis (India) (IN), National Institute for Research in Tribal Health (IN), Government Medical College (IN), Ashwini Hospital (IN), Institute of Medical Sciences and Sum Hospital (IN), All India Institute of Medical Sciences (IN), Medical College and Hospital, Kolkata (IN), Public Health Foundation of India (IN), Assam Medical College (IN), JSS Medical College and Hospital (IN)
Decent work and economic growth
Openalex Percentile: Top 8%
Hemoglobinopathies and Related Disorders
3.07
DOIOpen Access PDFOpenAlex
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.