Strengthening Health System and Community Mobilization for Sickle Cell Disease Screening and Management among Tribal Populations in India: An Interventional Study

Abstract

Sickle cell disease (SCD) affects 5% of the global population, with over 300,000 infants born yearly. In India, 73% of those with the sickle hemoglobin gene belong to indigenous tribes in remote regions lacking proper healthcare. Despite the prevalence of SCD, India lacked state-led public health programs until recently, leaving a gap in screening and comprehensive care. Hence, the Indian Council of Medical Research conducted implementation research to address this gap. This paper discusses the development and impact of the program, including screening and treatment coverage for SCD in tribal areas. With a quasi-experimental design, this study was conducted in six tribal-dominated districts in three phases – formative, intervention, and evaluation. The intervention included advocacy, partnership building, building the health system’s capacity and community mobilization, and enabling the health systems to screen and manage SCD patients. The capacity building included improving healthcare workers’ skills through training and infrastructure development of primary healthcare (PHC) facilities. The impact of the intervention is visible in terms of people’s participation (54%, 76% and 93% of the participants participated in some intervention activities, underwent symptomatic screening and demanded the continuity of the program, respectively), and improvement in SCD-related knowledge of the community and health workers (with more than 50% of net change in many of the knowledge-related outcomes). By developing screening and treatment models, this intervention model demonstrated the feasibility of SCD care at the PHC level in remote rural areas. This accessible approach allows the tribal population in India to routinely seek SCD care at their local PHCs, offering great convenience. Nevertheless, additional research employing rigorous methodology is required to fine-tune the model. National SCD program may adopt this model, specifically for community-level screening and management of SCD in remote and rural areas.

Keywords:

• Sickle cell disease
• screening
• treatment
• comprehensive care
• implementation research

Acknowledgements

The authors thank the funding of the Indian Council of Medical Research, New Delhi, as a National Task Force project (Grant Number: NTF/SCD/2019/SBHSR). The authors would like to thank the health departments of the states for their collaboration during the implementation of this study.

Author contributions

All authors made a significant contribution to the publication, including input into the conception, study design, implementation, data collection and/or analysis, and interpretation; participated in drafting, revising, or critically reviewing the manuscript; agreed on the journal to which it has been submitted and approved the final submitted version; and agree to be accountable for all aspects of the work.

Ethical approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committees of the respective author’s (PS, SBS, DB, MR, GS, and JS) institutions, and each of the six IECs approved the study protocol for the corresponding district.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Data availability statement

Data will be available on request to the corresponding author with a reasonable request.

Additional information

Funding

This study is funded by the Indian Council of Medical Research, New Delhi, India (Grant Number: NTF/SCD/2019/SBHSR).