Implementation research on registering cancer cases in primary health centres of Puducherry through community health workers.

Background & objectives Hospital-based cancer registry does not represent the true burden of cancer in the community. Initiating a Primary Health Centre (PHC)-based cancer registry may better estimate population-level data for cancer cases in an area. This study aimed to set up a system for facilitating a PHC-based cancer registry and to assess the registration status of cancer cases in various PHCs of Puducherry. The facilitating and limiting factors while setting up this registry were also assessed. Methods A quasi-experimental study with an embedded mixed-method design was conducted in 31 PHCs/Community Health Centres (CHCs) from March 2021 to November 2022. The interventions were implemented in all PHCs/CHCs of Puducherry with the involvement of the State Non-Communicable Diseases (NCD) cell. The line list of cancer cases from the Jawaharlal Institute of Postgraduate Medical Education & Research (JIPMER) Hospital-based cancer registry was shared with all PHCs/CHCs. Sensitization sessions for all Community Health Workers (CHWs) were conducted, and feedback on cancer registration status was given to the State NCD cell. Focus group discussion (FGD)/Key informant interview (KII) was undertaken to understand strengths, challenges, and suggestions. The logic model was used to understand the various indicators while setting up this PHC-based cancer registry. Results Over a one-year intervention period, 1270 cancer cases were registered at Puducherry's PHCs/CHCs, 1203 (88%) from the shared list and 67(5%) from other facilities. However, only 53 per cent of the expected living cases were captured in the various PHCs. Major limitations for registration were the COVID-19 pandemic, stigma, inadequate manpower, infrastructure issues, and privacy concerns during screening. Interpretation & conclusions It was feasible to set up a PHC-based cancer registry in all PHCs of Puducherry. However, registration of cancer cases was suboptimal, as population-based screening of cancer cases, as recommended in the National Programme for Prevention & Control of Non-Communicable Diseases (NP-NCD) programme, was weak due to the COVID-19 pandemic. Once this is strengthened, the PHC-based cancer registry will better represent the population.