Evidence brief: Implementation of a National Pediatric Cancer Registry in Ethiopia: A systems (“A3”) thinking approach

Abstract

Cancer registries allow for the collection of key data associated with patient demographics, diagnoses, and treatments, making them an essential tool for research aimed to improve the quality of care in patients with cancer. Previously, a pediatric cancer registry did not exist in Ethiopia, and prevented the collection of such data. In order to address this gap, a group of oncology clinicians and implementation scientists from the University of North Carolina worked in collaboration with all five pediatric cancer centers within Ethiopia to identify barriers and facilitators associated with a piloted REDCap registry, provide necessary training, and perform workflow analyses to create one integrated process for a pediatric cancer registry. Based on these analyses, deficiencies in the current process were identified and standard operating procedures were developed for each cancer center to guide data collection. These advancements led to the launch of Ethiopia’s first pediatric hospital based cancer registry.

Introduction

Cancer is a leading cause of death for children and adolescents globally. It is estimated approximately 400,000 children and adolescents are diagnosed with cancer annually with the most common childhood cancers: leukemias, brain cancers, lymphomas, and solid tumors, such as neuroblastoma and Wilms tumors [1]. Cancer is now curable for more than 80% of children who have access to modern treatments and robust supportive care. However, many low- and middle-income countries (LMIC) do not have adequate access to the recent advances in treatment and thus survival rates have lagged [2,3]. In Ethiopia, the eleventh most populous country in the world, there are an estimated 150,000 new cancer cases per year, and cancer accounts for 5.8% of total national mortality [4,5]. However, it is unknown within reasonable certainty how many children in Ethiopia are diagnosed, treated, and potentially survive cancer each year, creating a major gap in care.

In 2018, the World Health Organization (WHO) developed the CureAll initiative with the goal to achieve at least 60% survival for children with cancer globally while simultaneously reducing suffering for every child with cancer. The CureAll framework consists of four pillars (centers of excellence, universal health coverage, regimens for management, and evaluation and monitoring). These pillars, in addition to three enablers (advocacy, leveraged financing, and linked governance), support countries in implementing and strengthening childhood cancer programs [6]. Cancer registries, which fall under the evaluation and monitoring pillar of the CureAll framework, are an essential tool in the collection of demographics, diagnoses, and treatment decisions for cancer patients over a large population. Data collected within registries are important for understanding improvements in treatment and assessment of the impact of quality improvement initiatives. Reliance on passive, electronic registration practices to collect these data is not currently an option in Ethiopia due to the absence of electronic health records and electronic collection systems. At this time, one population-based cancer registry exists in Ethiopia, to collect data only for patients cared for in Addis Ababa [7]. This registry is limited to patients treated within the capital city and focuses on adult patients with cancer.