Sociodemographic characteristics and healthcare-seeking behaviour of patients with sickle cell disease: a cross-sectional study across five tribal districts in India.

Sickle 2007cell disease (SCD) is an inherited chronic blood disorder, with symptoms including anaemia, recurrent pain episodes and long-term organ damage. Approximately 1.2 million people in India are affected. Understanding the sociodemographic profile and health-seeking behaviour of individuals with SCD is essential for designing and implementing patient-centred care strategies. This study reports socio-demographic characteristics, living conditions and patterns of healthcare utilisation among individuals diagnosed with SCD in five tribal-dominant and underserved districts of India. Data were collected from 261 individuals diagnosed with SCD using a pretested, structured questionnaire administered through face-to-face interviews. Most participants (74%) learned about their SCD status through the public healthcare staff. A majority reported seeking care at primary or community health centres (69.7%), with smaller proportions attending tertiary-level government facilities (19.2%) and private hospitals (8%). A few participants (3.1%) have not sought treatment. Care-seeking behaviours in SCD vary across socioeconomic factors, including education, occupation, household income, housing type, health insurance coverage, and awareness levels, as reported in previous studies. These insights underscore the need for tailored interventions that address both healthcare access and the underlying healthcare-seeking barriers among the affected populations.