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Journal Article Observational Study Ppublish 1 citation

PubMed: 39463175 DOI: 10.1111/bjh.19829

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

Br J Haematol 206(1):296-309

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

Affiliations

  • Department of Hematology, All-India Institute of Medical Sciences, New Delhi, Delhi, India.
  • Department of Oncology Medical Affairs, Novartis Healthcare Private Limited, Mumbai, Maharashtra, India.
  • Thalassemia and Sickle Cell Society, Hyderabad, Telangana, India.
  • Haemato Oncology Care Centre, Vadodara, Gujarat, India.
  • ASHWINI Gudalur Adivasi Hospital, Gudalur, Tamil Nadu, India.
  • Srirama Chandra Bhanj Medical College & Hospital, Cuttack, Odisha, India.
  • ICMR-National Institute of Research in Tribal Health, Jabalpur, Madhya Pradesh, India.
  • Public Health Foundation of India, New Delhi, Delhi, India.
  • Zydus Medical College and Hospital Civil Hospital, Dahod, Gujarat, India.
  • All India Institute of Medical Sciences, Raipur, Chhattisgarh, India.
  • Government Medical College and New Civil Hospital, Surat, Gujarat, India.
  • Assam Medical College and Hospital, Dibrugarh, Assam, India.
  • Institute of Medical Sciences and sum Hospital, Bhubaneshwar, Odisha, India.
  • KIMS-Kingsway Hospital, Unit of SPANV Medisearch Life Sciences Pvt. Ltd. Nagpur, Maharashtra, India.
  • JSS Medical College and Hospital, Mysuru, Karnataka, India.
  • Nil Ratan Sircar Medical College and Hospital, Kolkata, West Bengal, India.
  • Gauhati Medical College and Hospital, Guwahati, Assam, India.
  • Arihant Multispecialty Hospital, Nagpur, Maharashtra, India.

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.

MeSH

Cells, Quality Of Life, Anemia, Sickle Cell, Vaso-Occlusive Crises

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