Curr Health Sci J, vol. 46, no. 3, 2020

Improving the Capacity of Health System and Community for Sickle Cell Disease Screening and Management Among Tribal Population in India: Protocol of an Intervention Study

[Original Paper]

B.V. BABU(1), P. SRIDEVI(2), S.B. SURTI(3), M. RANJIT(4), D. BHAT(5), J. SARMAH(6), G. SUDHAKAR(7), Y. SHARMA(1)

(1)Division of Socio-Behavioural & Health Systems Research, Indian Council of Medical Research, New Delhi, India,
(2)Department of Biotechnology, Indira Gandhi National Tribal University, Amarkantak, India,
(3)Department of Community Medicine, Parul Institute of Medical Sciences and Research, Vadodara, India,
(4)Indian Council of Medical Research-Regional Medical Research Centre, Bhubaneswar, India,
(5)Department of Anatomy, JSS Medical College, Mysore, India,
(6)Department of Biotechnology, Bodoland University, Kokrajhar, India,
(7)Department of Human Genetics, Andhra University, Visakhapatnam, India


Sickle cell disease (SCD) is one of the major public health problems in the world. In India, the burden of SCD is comparatively high in socio-economically disadvantaged tribal communities. Though efficacious interventions are available to manage SCD, they are not reaching to these communities and no comprehensive programme is in place in the health care system. Therefore, the Indian Council of Medical Research has initiated a nation-wide study to develop an effective intervention model for SCD patients in tribal areas through the government health care system. This intervention includes increasing awareness and preparing the communities for accessing the government health care system for SCD care, and improving the capacity of the primary health care systems including the training of the health care providers on prevention and management of SCD. The study adopted a quasi-experimental design with pre-vs. post-intervention comparisons of outcome variables within the interventional groups and with the control group. The study will be implemented in 6 districts which are endemic for SCD, spread across different geographical zones of India. In each district, four primary health centre (PHC) areas which are predominantly inhabited by tribal population will be selected. Of these four PHC areas, two will be selected randomly for implementing the intervention and the remaining two will be the control area. Information necessary for development and implementation of the intervention will be gathered during formative research, by using both quantitative and qualitative research methods. Intervention with an inclusive partnership and community mobilization will be implemented. The major steps in the implementation of intervention are partnership building with various health and non-health partners including the community. Capacity building and strengthening is another important component to enable the primary health facilities to screen and manage SCD patients. Primarily, sub-h

Sickle cell disease, treatment, control, intervention.

Bontha V. Babu, Division of Socio-Behavioural&Health Systems Research, Indian Council of Medical Research, Ansari Nagar, New Delhi 110 029, India, e-mail:

DOI 10.12865/CHSJ.46.03.08 - Download PDF