Feasibility of Developing a Community-Based Cancer Registry in Kawa Township in Myanmar

Abstract

PURPOSE The objectives of this implementation research were to implement an innovative approach by basic health staff (BHS) using a cancer registry mobile application for continuous data reporting and to evaluate the process of establishing a community-based cancer registry. METHODS Eighty BHS in Kawa township, Bago region, were trained on the mobile application based on locally adapted CanReg5 software, common cancers and symptoms, and plans for implementation and monitoring. Required information of confirmed cancer cases was collected by the focal persons among local BHS using the application installed on their mobile devices and reported online to a database accessed by researchers. Two focus group discussions with BHS were conducted to identify challenges encountered during implementation and their suggested practical solutions. RESULTS A total of 74 confirmed cancer cases were registered during the 6-month implementation period. The most common cancers registered were breast cancer (20 cases), followed by GI cancers (18 cases) and lung cancers (9 cases). This finding was consistent with common cancers from regional hospital reports. Some data incompleteness was observed in topography, staging, and treatment information. In qualitative discussions, BHS reported technical difficulties in becoming familiar with morphologic codes, in saving registered cases in their phones, and in reading biopsy results and clinical notes. BHS approached family members mostly to obtain the hospital/laboratory records of patients with confirmed cases and some faced reluctance as family members did not want to inform the patients about their diagnosis. BHS could not register some cases when documents were not present, although they definitely knew the cases, including expired cases. The patient and/or caregiver expected financial or other support when they were registered. Once cancer is highly suspected or diagnosed, patients stop seeking proper care and turn to traditional healers. This is a result of the lack of knowledge about cancer. The cost of cancer health care is also a factor that influences whether treatment is sought. CONCLUSION A community-based cancer registry by BHS is feasible to a certain extent with some improvements. More community participation and proper referral to facilitate care are needed, as well as addressing technical difficulties.