Scaling-up The COmpetency of Primary Care Workers to Manage Epilepsy by Task-Sharing (STOP-Epilepsy)
Epilepsy is common but intensely humiliating and sometimes leads to loss of life. We understood this after our recent research (https://onlinelibrary.wiley.com/doi/full/10.1002/epi4.12311). STOP-Epilepsy is a project supported by the DBT-Wellcome Trust India Alliance in which a team of experts will work closely with communities in three Indian districts and skill up young physicians to carry on this research in the future. They will mount a campaign so that more people with epilepsy be effectively treated at primary healthcare clinics and the community is more tolerant of them. They will use mobile phones to achieve these goals. We will then inform colleagues, policy-makers and everyone if this is a better way to treat epilepsy.
Epilepsy is common, stigmatizing and often not treated in resource-limited settings. Failure to treat may result in premature mortality. Treatment in primary healthcare is an option, given the lack of specialists. We aim to determine if a community-based, primary care initiative leads to improved seizure control, adherence and quality of life in people with epilepsy. We will develop a perpetuating, virtual research centre comprising clinicians, quantitative and qualitative researchers, engineers, health economists, health communication experts and research trainees from 6 organizations with emphasis on training young physicians for future research. A before-after design at three sites in India, with outcome evaluation by mixed methods will be employed. A preparatory phase will be followed by community screening to identify cases. Screen positives will be followed during an 18-month observation phase, and subsequently enter an 18-month interventional phase comprising of – training primary health workers in managing epilepsy, community awareness campaigns, and delivery of a technology-enabled care model. The primary outcome will be change in seizure remission rates between the observation and intervention phase. Quality of life, medication adherence and feasibility, acceptability and cost-effectiveness of the project will also be assessed. Our learnings will inform policy-makers about the effectiveness of the program.