Standardizing Late-Effects Data Capture in Childhood Cancer Survivorship: A FHIR-Based Follow-Up Questionnaire
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Summary
This study developed a standardized questionnaire based on HL7 FHIR to address the challenge of heterogeneous data collection for long-term follow-up of childhood cancer survivors. This provides a reusable foundation that supports not only primary clinical use but also secondary use within the European Health Data Space.
Details
As advances in pediatric oncology lead to a growing population of childhood cancer survivors at risk of long-term and late effects, current follow-up data collection remains heterogeneous. This lack of standardization limits interoperability and data reuse across various care settings and research infrastructures. Within the PanCareSurPass project, the goal was to standardize the follow-up questionnaire used in the Survivorship Passport (SurPass). Starting from CTCAE (Common Terminology Criteria for Adverse Events), a survivorship-oriented extension was developed to support longitudinal documentation of late effects during routine clinical follow-up, including into adulthood. The questionnaire was modeled using FHIR Questionnaire and QuestionnaireResponse resources and integrated into the PanCareSurPass FHIR Implementation Guide. This provides a reusable foundation for interoperable late-effects data capture, supporting both primary clinical use and secondary use in alignment with the European Health Data Space. This work is crucial for ensuring continuity of care and enabling observational studies and registries across Europe.
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