Abstract
BACKGROUND: Sickle cell anemia (SCA) is the most common inherited genetic red blood cell disorder, highly prevalent in the tribal population residing in the Central India. The affected populace are disadvantaged due to a lack of accessibility and unavailability of transportation, flawed communication systems, insufficiency of health professionals, and basic health infrastructure. OBJECTIVE: The objective was to set up a yoga-based lifestyle intervention (YBLI) center that is sustainable, accessible, affordable, and acceptable as the part of the Integrated Sickle Cell Anemia Research Program (ISCARP) randomized control trial study. METHODOLOGY: By analyzing previous government screenings, the study identified remote, high-prevalence areas. Based on these criteria, encompassing 58 villages were surveyed in Maharashtra. Bijari village in Nandurbar was chosen for setting up the YBLI center. This center was equipped with basic health facilities and Information and Communication Technology infrastructure, managed in a hybrid model by ISCARP staff and incentive-based government health workers. A Central Control Center was established at SVYASA University in Bangalore to coordinate all the activities. RESULTS: The YBLI center was successfully set up in Bijari village. At the center, around 69 children and adolescents got benefited during Yoga intervention. Only one subject out of 34 in intervention cohort experienced mild crisis. Their basic vitals were recorded regularly. On 11 different occasions, sever crisis of the participants was addressed which reduced morbidity and mortality rate. Furthermore, a social and health profile of these participants was created and updated regularly using sickle cell patient Information Management System, SIMS Portal. DISCUSSION: Establishment of easily accessible YBLI center for providing primary healthcare, tele consultation with doctors, and maintaining electronic medical record and monitoring and recording vitals in addition to providing adjuvant Yoga therapy. CONCLUSION: By offering prompt medical help and counseling, the YBLI center reduced the psychological and economic strain of sickle cell disease on the local populace. The center also captures and stores medical health records, updated on regular basis, which is of great value to the government in deciding and designing policies.