Assessment of Barriers and Enablers for Implementing a Population-Based Childhood Cancer Registry in Chennai, India
Venkatraman Radhakrishnan1, Ayswarya Jothi1, Riya Mary1
1Department of Medical Oncology and Pediatric Oncology, Cancer Institute (W.I.A), Adyar, Chennai, India.
Insights
India established its first childhood cancer registry in Chennai. Key barriers included technology and record-keeping issues, while knowledge and collaboration facilitated its implementation, offering a model for other nations.
Area of Science:
- Oncology
- Public Health
- Health Informatics
Background:
- Most childhood cancer cases occur in low- and middle-income countries, which lack essential population-based childhood cancer registries (PBCCRs).
- India established its first dedicated PBCCR in Chennai on October 4, 2022, to address this gap.
- The registry covers children aged 0-19.
Purpose of the Study:
- To identify barriers and enablers for implementing the Chennai PBCCR.
- To provide insights for establishing similar registries in India and other resource-limited settings.
Main Methods:
- A sequential explanatory mixed-method study was conducted from April 2023 to March 2024.
- Quantitative data were collected via questionnaire from 25 professionals.
- Qualitative data were gathered through in-depth interviews with 23 participants, including professionals, stakeholders, and caregivers, analyzed using the Consolidated Framework for Implementation Research.
Main Results:
- Impediments identified include technological constraints, poor record-keeping, insufficient case record details, and inadequate human resources.
- Facilitators include professional knowledge, belief in data sharing, perceived need and benefits of the registry, self-efficacy, supportive infrastructure, and collaborative networks.
Conclusions:
- The Chennai PBCCR implementation offers a replicable model for establishing and operating registries in India and globally.
- Registry data are crucial for understanding childhood cancer burden and improving patient outcomes.
- This initiative provides hope for children and families affected by childhood cancer.
Background:
Despite most childhood cancer cases being diagnosed in low- and middle-income countries, there is a significant deficit of population-based childhood cancer registries (PBCCRs) in these regions. To address this critical gap, we established India's first dedicated PBCCR in Chennai on October 4, 2022, covering children aged 0-19. This study aims to identify the barriers and enablers to implementing the Chennai PBCCR.
Procedure:
Between April 2023 and March 2024, a sequential explanatory mixed-method study was conducted across 10 of the 16 centers in Chennai that agreed to support the PBCCR. A total of 25 professionals agreed to participate in the quantitative phase utilizing a structured questionnaire. For the qualitative phase, in-depth interviews were conducted with 23 participants, including 16 from the quantitative phase, two stakeholders, and five caregivers. The interview guide was constructed, and the responses were analyzed using the Consolidated Framework for Implementation Research.
Results:
Themes from the qualitative analysis revealed technological constraints, poor record-keeping, insufficient details captured in case records, and inadequate human resources as impediments. At the same time, factors such as knowledge, belief in sharing high-resolution data, the requirement and advantages of implementing a childhood cancer registry, professional self-efficacy, work infrastructure, and collaborative networks emerged as facilitators to the successful implementation of PBCCR.
Conclusion:
Our experience and the findings of this study serve as a model for successfully implementing and operating PBCCRs in India and other countries. Registry data are vital to improving the understanding of childhood cancer burden and offer hope to children and their families.
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