Survivorship passport as a new clinical paradigm in pediatric oncology: An exploratory observational study

Abstract

Introduction: Advances in pediatric oncology have increased survival rates of patients. To support the long-term care of these survivors, the Survivorship Passport (SurPass) provides a personalized, portable summary of their diagnosis, treatments, and potential sequelae.

Objective: This study investigates the correlation between SurPass use and long-term knowledge gains among survivors, as measured by its impact on the accuracy of treatment recall and awareness of potential long-term effects.

Methods: This observational study included long-term survivors classified into two arms: Those with SurPass (Arm A) and those without (Arm B). A structured questionnaire assessed recall of diagnosis, chemotherapy, radiotherapy, and awareness of late effects. Responses were scored for accuracy, and between-group comparisons were performed.

Results:Survivors with SurPass, who are typically followed up in specialized centers, demonstrated markedly higher recall accuracy than those without it. Correct recollection of radiotherapy and chemotherapy was higher in Arm A by 64% (p=0.05) and 48% (p=0.03), respectively. Awareness of late effects and adherence to structured follow-up were also greater within Arm A. The SurPass mitigated the expected decline in recall accuracy over time, particularly for survivors treated at younger ages.

Conclusion: Preliminary findings suggest that SurPass may support patient engagement and continuity of care in survivorship settings; however, longitudinal studies are needed to confirm these exploratory findings.

Keywords

Pediatric oncology / Cancer survivors / Survivorship passport / Exploratory observational study

Acknowledgements

None.

Funding

None.

Conflict of interest

The authors declare they have no competing interests.

Author contributions

Conceptualization: Federico Ruta, Sipontina Rita Zerulo, Roberta Di Matteo

Formal analysis: Stefano Mancin, Alice Masini, Gabriele Caggianelli

Investigation: Sabrina Cannone, Francesca Dal Mas, Paolo Ferrara

Methodology: Tatiana Bolgeo, Mauro Parozzi, Giovanni Cangelosi

Writing–original draft: All authors

Writing–review & editing: All authors

Ethics approval and consent to participate

The study received ethical approval from the Regional Ethics Committee of Liguria, under the PanCareFollowUp protocol (Protocol number: Registro CER Liguria 295/2020–ID 10632). Data were collected anonymously and processed by the authors in full compliance with applicable Italian regulations on clinical research (Legislative Decree June 24, 2003, No. 211 and Ministerial Decree December 17, 2004), as well as relevant European legislation, and in accordance with the principles of the 1964 Declaration of Helsinki and its subsequent amendments.

Consent for publication

Informed consent was obtained from all individual participants included in the study. Before accessing the questionnaire, participants were required to provide informed consent and consent for the processing and publication of their data. They were also provided with a specific information form detailing the study’s purposes, methods, and consent for the publication of data findings.

Availability of data

The data supporting this research are available upon request from the corresponding author for data protection reasons.

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