Comprehensive integrated care for patients with sickle cell disease in a remote aboriginal tribal population in southern India

Background: Healthcare delivery for sickle cell disease (SCD) can be challenging, in low resource settings. We studied the feasibility of delivering comprehensive SCD care in a community-based network for remote, economically, and socially disadvantaged tribes in Gudalur, India.

Procedure: We reviewed medical records for all patients followed at the Gudalur Adivasi Hospital. We used published quality of care indicators to benchmark screening and routine healthcare maintenance.

Results: We screened 9,646 individuals (60.4%) under the age of 30 of a population of 25,000 individuals. Of 111 active patients with SCD, 71% have had at least one annual comprehensive clinic visit at a median visit interval of 57 days. We provided pneumococcal immunization and penicillin prophylaxis to 56 (50%) patients and HU to 68 (61%). Median spleen size was 1 cm (range 1-6 cm), mean was Hb 9.3 g/dl and we reported a mean of 0.7 painful episodes/year. Premature deaths occurred in 19 patients at a median age of 23 years due to acute chest syndrome, sepsis, severe anemia, stroke, mesenteric infarction, puerperal sepsis, or sudden unexplained death. Healthcare maintenance met 11 of 17 published SCD quality of care indicators. Average cost was 1,343 Indian Rupees (INR) (approximately US$ 25) per hospitalization and 173 INR (approximately US$ 4) per clinic visit.

Conclusion: High quality comprehensive care for SCD can be delivered for a low income, aboriginal population in India through a community driven network of care. This model can serve as a template for healthcare delivery for SCD in low-income communities.