Pre-implementation assessment of a national Ethiopian pediatric cancer registry

In Ethiopia, cancer accounts for about 5.8% of total national mortality. It is estimated that the annual incidence of cancer is ∼60 960 cases and the annual mortality is more than 44 000, which is likely an underestimation.¹  Tikur Anbessa Specialized Hospital (TASH) in Addis Ababa is home to the nation’s first and largest pediatric hematology-oncology service, opened in 2013 in partnership with The Aslan Project (hereafter called Aslan). Although the survival rate for acute lymphoblastic leukemia is 80% or better in the United States, it is estimated that the survival rate is below 20% in Ethiopia. Part of the problem is that there is minimal well-documented demographic information regarding patients, their diseases, and disease outcomes. The World Health Organization (WHO) provides recommendations for creating cancer registries.²  Aslan provided funding to support data clerks in 2 hospitals in Ethiopia: TASH and Jimma University Specialized Hospital (Jimma, Ethiopia). Aslan also supported initial training on data collection for staff at those institutions, as well as staff at St. Paul’s Hospital Millennium Medical College (Addis Ababa, Ethiopia), and Ayder Comprehensive Specialized Hospital (Mekelle, Ethiopia).³  As part of the collaboration with the TASH/Aslan/University of North Carolina (UNC) pediatric hematology-oncology team, a team of UNC pharmacists traveled to TASH in March 2019 with the objective of performing a pre-implementation assessment for introducing a national pediatric cancer registry.

There were 3 specific aims around which the methods were designed: (1) assessment of the perceptions of the registry by hospital staff (eg, physicians, nurses, pharmacists, and data clerks who would be impacted by it), (2) evaluation of workflow gaps in how patient data are collected and entered into the medical chart and the registry, and (3) characterization of the current registry across participating sites, including which variables were being collected and how these variables compared with standards set by the WHO, and description of how the data were entered, including completeness.

We assessed the first aim by using a validated Organizational Readiness for Change (ORC) survey, which we administered to a multidisciplinary group of health care workers before and after a workshop presented by our team on the importance and benefits of a registry (Table 1). We assessed the second aim by using a structured problem-solving approach (A3 strategy) to map out the workflow and propose interventions (Figure 1). We achieved the third aim by comparing Excel spreadsheets from 2 different hospitals for differences between them as well as completion, consistency, and inclusion of variables recommended by WHO (Table 2).

The hospital staff and leadership have generally positive perceptions of the pediatric cancer registry, which were enhanced by the workshop. The workflow assessment revealed several gaps that were systematically addressed by using a 3-phase implementation approach. The existing spreadsheet-based registry was missing WHO-recommended variables and had inconsistent completion because of the workflow gaps. During one of the upcoming visits by the implementation team, a pediatric oncology summary sheet will be incorporated into the patients’ medical records to better summarize their journey starting from diagnosis. This will be used by the data clerks in an enhanced spreadsheet to create a more complete data set (Table 3).

Conflict-of-interest disclosure: The authors declare no competing financial interests.

Correspondence: Benyam Muluneh, University of North Carolina Medical Center, 301 Pharmacy Lane, Chapel Hill, NC 27599; e-mail: bmuluneh@unc.edu.