(072) Evaluating Implementation of a Hospital-Based Cancer Registry to Improve Childhood Cancer Care in Low- and Middle-Income Countries

Poster Abstract:

Background: Cancer is a leading cause of global childhood mortality, affecting approximately 400,000 children annually. While treatable with modern therapies, children living in low- and middle-income countries (LMICs) have limited access to care and lower survival rates. Hospital-based cancer registries (HBCRs) collect detailed patient information to identify and track opportunities for interventions to improve care. The St. Jude Global Childhood Cancer Analytics Resource and Epidemiological Surveillance System (SJCARES) is a cloud-based HBCR facilitating quality data collection of childhood cancer. Wide variation in success of implementation provides an opportunity for further research into the implementation of SHCARES, to create a sustainable and adaptable HBCR in LMICs.


Objective: We aimed to identify barriers and facilitators to create and refine a novel pre-implementation process and enhance the implementation of the SJCARES Registry.

Methods: Seven of 89 sites using the SJCARES registry were selected, stratified by global region and stage of implementation. Semi-structured interviews were conducted with key groups (clinicians, administrators, data clerks) using an interview guide developed from the Consolidation Framework for Implementation Research (CFIR). Interviews were conducted via Zoom and transcribed by Landmark Associated. Transcripts were thematically coded using rapid qualitative analysis.

Results: A total of 18 participants (11 clinicians, 4 administrators, 3 data clerks) were interviewed. Several barrier themes were identified: 1) no prior experience with registries; 2) lack of resources; 3) lack of government or administrative support; 4) damaged, misplaced, or illegible medical records; 5) training/mentorship not sufficient; 6) concerns for future of data; 7) cultural considerations; 8) difficulty of collaboration within departments and external entities (hospitals, labs). Facilitator themes were identified: 1) internal and external support for registry; 2) clear and extensive training; 3) dedicated support staff; 4) registry ease of use; 5) good organization of medical records.

Conclusion: Interviewed stakeholders identified key barriers and facilitators to implementation of the SJCARES Registry across multiple phases. We plan to develop a readiness assessment and process maps to help guide more successful implementation of the SJCARES Registry and other HBCRs in LMICs.

References (must also be included in final poster): Bray F, Laversanne M, Weiderpass E, Soerjomataram I. The ever-increasing importance of cancer as a leading cause of premature death worldwide. Cancer. In press. 

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