Epidemiology of vaso-occlusive crisis among sickle cell disease patients in India: A community-based multi-centric study

Background and objectives Morbidity burden of sickle cell disease (SCD) in India has been underestimated till now due to a lack of nationwide data on the prevalence of clinical outcomes, including the most prevalent clinical manifestations like vaso-occlusive crises (VOCs). This multi-centric study reports the epidemiological characteristics of VOCs among SCD patients in India. Methods This is a prospective, community-based, multi-centre cohort study with fortnightly home visits conducted over 12 months in five SCD-endemic districts of India. A cohort of 252 patients was followed up, and data regarding any illness related to SCD and its management in the previous fortnight were collected using a structured questionnaire. Results Out of the total 252 SCD patients followed up, 223 (88.5%) patients reported 2118 crises in a year [8404 episodes per 1000 patients-year; 95% confidence interval (CI): 8040-8760]. Pain anywhere in the body was the most prevalent symptom [97.3% (n=217) of the participants, with 7 (3-13) median (IQR) episodes per patient in a year]. Among total crisis episodes, 48.7% (n=1031) of the episodes were treated at a health facility. Interpretation and conclusions A higher number of crisis episodes reported among the majority of the patients demystifies the notion that SCD is milder and less severe in India. The lower utilization of healthcare resources among SCD patients raises a serious concern.