Burden of vaso‐occlusive crisis, its management and impact on quality of life of Indian sickle cell disease patients
Year: 2024
Type: article
Study design: Observational Study
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.
Source: British Journal of Haematology
DOI: 10.1111/bjh.19829
Authors: Tulika Seth, Shashank Udupi, Suman Jain, Seema Bhatwadekar, Nandakumar Menon, Rabindra Kumar Jena, Ravindra Kumar, Shomik Ray, Bharat Parmar, Anil Kumar Goel, Ashvin Vasava, Anupam Dutta, Priyanka Samal, Riya Ballikar, Deepa Bhat, Tuphan Kanti Dolai, Jina Bhattacharyya, Disha Shetty, Manish Mistry, Dipty Jain
Institutions: All India Institute of Medical Sciences, Novartis (India), Sriram Chandra Bhanja Medical College Hospital, Indian Council of Medical Research, National Institute for Research in Tribal Health, Public Health Foundation of India, Zydus Lifesciences Limited (India), All India Institute of Medical Sciences Raipur, Government Medical College, Assam Medical College, Institute of Medical Sciences and Sum Hospital, Krishna Institute of Medical Sciences, JSS Medical College and Hospital, Nil Ratan Sircar Medical College and Hospital, Medical College and Hospital, Kolkata, Gauhati Medical College and Hospital
Language: English
Subfield: Genetics
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $4,940
OpenAlex ID: W4403846862
