From Lacking to Linking: A Call for Inclusion of Pediatric Palliative Care in National Cancer Data Ecosystems

Area of Science:

• Oncology
• Palliative Care
• Health Services Research

Background:

• National cancer registries lack comprehensive pediatric palliative care (PPC) data.
• This absence creates significant gaps in understanding care delivery for children with cancer.
• Existing data limitations hinder improvements in care equity and outcomes.

Purpose of the Study:

• To highlight the critical need for standardized PPC data within national cancer registries.
• To emphasize the importance of integrating PPC data for research and policy development.
• To advocate for improved data infrastructure to support childhood cancer care.

Main Methods:

• Analysis of current data gaps in national cancer registries regarding PPC.
• Review of the impact of missing PPC data on care quality and equity.
• Proposal for standardized, longitudinal PPC data elements.

Main Results:

• Significant underrepresentation of PPC data in national cancer registries.
• Identification of critical knowledge gaps concerning the timing and nature of PPC for pediatric cancer patients.
• Demonstration of how data deficiencies impede research and policy efforts.

Conclusions:

• Mandating standardized, longitudinal PPC data elements is essential.
• Integration into national data ecosystems is necessary for meaningful linkage and research.
• Policy development for childhood cancer requires robust, accessible PPC data.