Impact of a comprehensive sickle cell disease care programme on community knowledge among Indian tribal populations: a multicentric study.

Background: India has initiated a programme to eliminate sickle cell disease (SCD) by 2047. As the programme progresses with screening, treatment, management and preventive activities will eventually be initiated. However, the community's knowledge and involvement are important for effective implementation of these public health interventions. The overall knowledge related to SCD among the Indian tribal communities is inadequate and can be enhanced through community-based interventions. This article reports the impact of a comprehensive community-based SCD care intervention on improving SCD-related awareness and knowledge among Indian tribal communities in six SCD-endemic tribal-dominated districts.

Methods: A multicentric community-based and health system strengthening intervention, a quasi-experimental design comparing pre- and post-intervention outcomes within intervention groups and with the control group, was conducted to improve the health system's capacity to screen and manage SCD and to improve the community's acceptance of screening and management through community mobilisation, including information, education and communication (IEC). This article utilised pre- and post-intervention data (from 9837 and 9696 participants in pre- and post-intervention surveys in both control and intervention areas) on community knowledge of SCD. The difference-in-differences (DID) methodology was used to assess the net change in outcomes.

Results: There was a significant increase in knowledge among people exposed to the intervention and a significant increase in the proportion of people who heard of SCD after the intervention, with a DID estimate of 55.5. A similar impact was reported for improved knowledge on the cause of SCD (DID=61.4), diagnostic methods (DID=60.5), symptoms (DID=55.5), treatment (DID=57.7), prevention (DID=59.7) and various aspects of these issues.

Conclusions: This study demonstrates the effectiveness of a community-based intervention programme aimed at improving SCD-related knowledge among the tribal communities. The findings underscore the importance of targeted awareness programmes in addressing gaps in knowledge. Strong community mobilisation and IEC activities are key components of SCD care programmes.