Sickle cell disease in Indian tribal population: Findings of a multi-centre Indian SCD registry.

Autor: Sharma Y; Division of Socio-Behavioural, Health Systems & Implementation Research, Indian Council of Medical Research, New Delhi, India., Bhat D; Department of Anatomy, JSS Medical College, JSS Academy of Higher Education and Research, Mysore, India., Sridevi P; Department of Biotechnology, Central Tribal University of Andhra Pradesh, Vizianagaram, India., Surti SB; Department of Community Medicine, Parul Institute of Medical Sciences and Research, Parul University, Vadodara, India., Ranjit M; Division of Molecular Epidemiology, Indian Council of Medical Research-Regional Medical Research Centre, Bhubaneswar, India., Sarmah J; Department of Biotechnology, Bodoland University, Kokrajhar, India., Sudhakar G; Department of Human Genetics, Andhra University, Visakhapatnam, India., Babu BV; Division of Socio-Behavioural, Health Systems & Implementation Research, Indian Council of Medical Research, New Delhi, India. Electronic address: babubontha@gmail.com.
Jazyk: angličtina
Zdroj: Blood cells, molecules & diseases [Blood Cells Mol Dis] 2024 Nov; Vol. 109, pp. 102873. Date of Electronic Publication: 2024 Jul 14.
DOI: 10.1016/j.bcmd.2024.102873
Abstrakt: Background: Sickle cell disease (SCD) registries provide crucial real-world data on demographics, epidemiology, healthcare, patient outcomes, and treatment efficacy. This paper presents findings from the Indian SCD Registry (ISCDR) on clinical manifestations, crisis episodes, disease management, and healthcare utilization in patients with SCD from 12 primary health centres (PHCs) in six tribal districts of India.
Methods: The ISCDR was introduced along with a three-tier screening process. Its Android-based application incorporates two electronic case report forms for patient data collection over one year. This paper presents a year's data from the ISCDR's 324 patients with SCD.
Results: Patients with SCD, aged one to 65 years, exhibited varied clinical manifestations. Most patients (85.2 %) were unaware of their SCD status before enrolling in ISCDR. Moderate to severe anaemia was prevalent (66.05 % and 30.56 %, respectively). Pain was a common complaint (80.86 %; CI: 76.17-85.00), while symptoms of stroke included sudden severe headaches (34.57 %; CI: 29.40-40.02). Common splenic sequestration symptoms included stomach pain (42.90 %; CI: 37.44-48.49) and abdominal tenderness (13.27 %; CI: 9.77-17.46), as a sign. Healthcare utilization was high, with 96.30 % receiving treatment and 83.64 % consuming hydroxyurea. Hospitalization occurred for 38.27 % (CI: 32.95-43.81), and 12.04 % (CI: 8.70-16.09) had blood transfusion during last year.
Conclusions: ISCDR serves as a dynamic digital database on SCD epidemiology, clinical aspects, treatment and healthcare utilization. Notably, many patients lacked prior awareness of their SCD status, underscoring the need for improved awareness and care management. Integrating the registry into the national programme can streamline treatment implementation, prioritize management approaches, and optimize individual benefits.
(Copyright © 2024 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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