The Survivorship Passport for childhood cancer survivors: improvements and experience within several European PanCare projects.
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BACKGROUND/PURPOSE: As the population of childhood cancer survivors (CCS) continues to grow, personalized long-term follow-up (LTFU) care has become essential for ensuring optimal quality of life. The Survivorship Passport (SurPass) was developed to support efficient delivery of high-quality LTFU care, with the provision of treatment summaries and personalized follow-up recommendations. Updates to SurPass, from version v1.1 to v2.0, were made possible through two complementary European-funded projects: PanCareFollowUp and PanCareSurPass. METHODS: Within PanCareFollowUp, SurPass was updated with new variables and algorithms based on International Guideline Harmonization Group/PanCare guidelines (v1.2) and tested in one clinic. During PanCareSurPass, the platform was updated to v2.0, featuring certification as Medical Device (MD) and interoperability with Electronic Health Information Systems, and deployed across clinical sites in six European countries. RESULTS: The current SurPass v2.0 includes 242 variables and 47 algorithms for generation of the Standardized Care Plan. It is certified as MD and supports both manual and semi-automatic data entry through the adoption of Health Level Seven International Fast Healthcare Interoperability Resources (HL7-FHIR). The preliminary experience with SurPass delivered to 207 CCS in Italy within the PanCareFollowUp is reported. CONCLUSION: Interoperability via HL7-FHIR and the MD certification of the SurPass allow its use in clinical practice, and a reduction in time needed to generate the document providing homogeneous and personalized LTFU care for European CCS. Cost of interoperability through HL7-FHIR is offset by savings due to time reduction for TS generation. Experience in one clinic document the satisfaction of survivors who shared the document with their family doctors. IMPLICATIONS FOR CANCER SURVIVORS: The Survivorship Passport (SurPass) provides childhood cancer survivors with a standardized, personalized summary of their cancer treatment and individualized follow-up recommendations based on international guidelines. Its implementation across multiple European countries demonstrates the feasibility of delivering consistent survivorship information that can support long-term follow-up, facilitate communication between survivors and healthcare providers, and promote informed engagement in survivorship care.