The Survivorship Passport for childhood cancer survivors. Improvements and Experience within several European PanCare projects

The Survivorship Passport for childhood cancer survivors. 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Improvements and Experience within several European PanCare projects Monica Muraca*, Davide Saraceno*, Giulia Stabile, Alessandra Berti, and 34 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9481585/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract 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 in a Survivorship Care Plan. 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, the SurPass was updated with new variables and algorithms based on International Guideline Harmonization Group/PanCare guidelines and tested in one clinic in Italy. 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 for the TS and 47 algorithms for generation of the SCP. It is certified as Class I MD and supports both manual and semi-automatic data entry through the adoption of Health Level Seven International Fast Healthcare Interoperability Resources. Experience with SurPass delivery to 207 CCS in Italy is also reported. Conclusion: SurPass represents a useful digital tool enabling evidence-based, equitable, personalized LTFU care for European CCS, with significant benefits for delivery of long-term care as well in the transition period from paediatric to adult care. Future integration of the SurPass in a mobile app as the Cancer Survivor Smart Card announced by the European Commission will further facilitate long term care of CCS. Childhood cancer survivors Survivorship Long-term follow-up Late effects Cancer treatment summary Personalized survivorship care Care Plan PanCareSurPass PanCareFollowUp Data standardization Interoperability HL7-FHIR HL7 Europe Cancer Common Data Model European Health Data Space Figures Figure 1 Figure 2 Introduction Over the past decades, as treatments have improved, the number of childhood cancer survivors (CCS) has risen, with over 500,000 individuals currently living in Europe and approximately 12,000 new survivors each year (1,2). CCS represent a vulnerable population, at increased risk of developing long-term complications, including organ dysfunction, psychosocial challenges and subsequent malignancies, related to their previous disease and treatment (3). This population may benefit from life-long monitoring for possible long-term complications. In 2018, in a revision of the Erice Statement published in 2008 (4) in which the concepts of cure and care after childhood cancer were discussed, Jankovic et al. stated that “after completion of treatment for the original cancer, it is the responsibility of the paediatric cancer unit to provide the survivor and their parents with a summary of the cancer’s characteristics, treatments received and potential long-term complications resulting from the cancer or its treatment” (5). In this framework, the Survivorship Passport (SurPass) was developed by the Cineca IT company, in collaboration with colleagues of the IRCCS Istituto Giannina Gaslini (IGG) in Italy within several EU-funded projects, which involved the PanCare network (6). SurPass is a digital tool that generates a treatment summary (TS) of the clinical history of each CCS, together with personalized recommendations for follow-up based on internationally approved guidelines in a Survivorship Care Plan (SCP). After the release in 2012 of the first version of the SurPass (v1.0), further updates were made, which included: Italian and German translations (ExPorNet project – v1.0.1); algorithms to generate few personalized recommendations according to evidence-based guidelines (PanCareSurfUp - v1.1), and an Italian version including comprehensive screening recommendations based on expert opinion of the Associazione Italiana di Ematologia ed Oncologia Pediatrica (AIEOP) Late Effects Working Group (v1.1.1). This manuscript describes the further developments of the SurPass tool, made possible thanks to two subsequent and complementary European projects: PanCareFollowUp (grant number 824982) and PanCareSurPass (grant number 899999), which led to the current version SurPass v2.0. Methods The PanCareFollowUp project was conducted between January 2019 and December 2023 while the PanCareSurPass project started in March 2021 and ended in August 2025 (7,8). In detail, PanCareFollowUp developed the person-centred care intervention approach for standardized LTFU based on the International Guideline Harmonization Group (IGHG - www.ighg.org)/PanCare guidelines and conducted a multi-country study to gain deeper insights into the feasibility and effectiveness of the intervention (7, 9, 10). With this goal, the template of a harmonised SCP was developed comprising an update of the two main components in SurPass v1.1: i) TS; and ii) recommendations for long term surveillance of possible treatment-related complications (9). The harmonized SCP was implemented in SurPass v1.2, which was tested in one clinic in Italy. In more detail, in SurPass v1.2, the TS variables list of v1.1 was revised, while the coding systems for cancer diagnosis (ICD-O-3 and ICCC-3), chemotherapeutic agents (ATC), congenital conditions (ICD-9 and/or Orphanet) and anatomic areas exposed to radiotherapy (SurPass specific) were maintained as in v1.1 (6). Several other v1.1 functionalities to support clinicians in data entry and in saving time through intelligent auto completion, checks, calculation and guidance were maintained. Among them, the most relevant were the automatic ICCC-3 classification, based on ICD-O-3 morphology and topography codes, and the inclusion of synonyms and commercial names for chemotherapeutic agents, allowing for the standardized assignment of different commercial drug names (e.g., endoxan) to the same ATC-coded compound (e.g., cyclophosphamide). The recommendations for LTFU are the other main SurPass component and provide each CCS with a personalized long-term screening plan. Recommendations are derived from the evidence-based guidelines published by IGHG (11), further integrated for issues not yet covered by those developed within the PanCareFollowUp project using a pragmatic approach (9). According to the IGHG model, for each guideline related to a potential late complication, the following aspects are “translated“ in the respective recommendation: i) who needs surveillance (i.e. is at risk) for the given complication; ii) which surveillance modality should be used; iii) when surveillance should be initiated and discontinued, if applicable; iv) how often surveillance should be performed and, v) what actions should be taken if abnormalities are detected (11). In general, two main categories of recommendations were defined as those: i) recommending that a healthcare professional (HCP) make survivors aware of the possible late-effects and periodically collects their medical history and/or perform a physical examination without performing surveillance tests, and ii) recommending a surveillance test. For details, see Appendix A in van Kalsbeek et al. (9). Algorithms related to the recommendations were implemented in SurPass v1.2 (Table 1 and 2), allowing the SurPass platform to automatically propose a specific screening recommendation if any of the risk factors identified in the guidelines are included in the survivor’s TS. The algorithms were coded in the open-source Go programming language using a modular design, allowing for easy modification and extension (12). Validation tests were performed after a preliminary upload of mock cases. For each case, system-generated recommendations were compared with guideline expectations; discrepancies were catalogued, corrected, and verified. A tracking system recorded and monitored technical problems and their resolution (13). SurPass v1.2 was then used at IGG to deliver personalized SurPass to survivors included in the PanCareFollowUp implementation study (10). The subsequent PanCareSurPass project further developed SurPass from v1.2 to v2.0. Since algorithms implemented in the SurPass platform facilitate the HCPs’ decision-making process by automatically proposing personalized recommendations for the SCP, during PanCareSurPass (SurPass v2.0), procedures were followed to certify the platform as a medical device (MD). Additionally, to accelerate the process of data retrieval for the completion of the TS and to allow the integration of SurPass in clinical practice, during PanCareSurPass, procedures were established to allow bi-directional data exchange between the new v2.0 platform and institutional Electronic Health Information Systems (EHIS) of the participating clinics. The Health Level Seven International (HL7) Fast Healthcare Interoperability Resources (FHIR) standard (14) was adopted to support interoperability. To ensure consistent implementation across clinics, a dedicated HL7-FHIR Implementation Guide (IG) was developed. After identifying barriers and facilitators for implementation of the SurPass and connection to the IT systems (15-16), SurPass v2.0 was implemented in a multi-country study in six clinics in Austria, Belgium, Germany, Italy, Lithuania and Spain. Cineca ensured personal data security by implementing all necessary cybersecurity measures, conducting a Data Protection Impact Assessment (DPIA) and ensuring compliance with the European General Data Protection Regulation (GDPR https://gdpr.eu) (17) and with standards for Good Clinical Practice and pseudo-anonymization. The authorization to store personal data both in the SurPass v1.2, as well as 2.0, platform was included in both PanCareFollowUp and PanCareSurPass study protocols, submitted to the Ethics Review Board of each participating institution. Moreover, a bilateral data protection agreement for managing personal data was established between each clinic and Cineca. Results After careful consultation with PanCareFollowUp partners, the structure and key components of the SurPass v1.1 template (TS, SCP) were maintained in v1.2 (Figure 1). The TS was implemented with 71 new variables leading to a total of 242 variables in SurPass v1.2 The new variables were mostly pertinent to Major surgery or to the Relevant clinical events , sub-sections of Front-line treatment (Figure 1) after being identified by the guidelines as potential risk factors for the development of specific late complication(s) (9). Overall, 47 algorithms were developed to allow the automatic proposal by the platform of personalized recommendations for each survivor. The number of algorithms differs from the number of recommendations as some recommendations required more than one algorithm, either to address different issues included in the same recommendation or to differentiate risk stratification for the outcome, while for other recommendations no algorithm was necessary (Tables 1 and 2). In particular, no algorithms were required for seven recommendations: i) coronary artery disease, as the specific risk factor (chest radiotherapy) and recommendations (control for modifiable cardiovascular risk factors) were already included in all other cardiac-specific recommendations, ii) alopecia, as the condition is visible at the clinical visit, if present, and iii) cancer-related fatigue, iv) health promotion, v) mental health problems, vi) chronic pain, and vii) psychosocial problems, as all CCS are considered at risk for these outcomes and it is good clinical practice to ask specific questions about tiredness, sadness, or school/work performance at each visit. Furthermore, a general statement was included at the beginning of the recommendations section about the importance of healthy lifestyle behaviours and of contacting HCPs in case of any new or persisting symptom (see below). As previously mentioned, further improvements and regulatory milestones were included in SurPass v2.0 as part of the PanCareSurPass project. In detail, the platform was certified as Class I MD in accordance with the EU Regulation 2017/745 on medical devices (UDI-DI Code 8059793870019; Italian Ministry of Health # 2328038). Procedures for post-market surveillance were implemented to ensure the tool’s safety and effectiveness in real-world applications; moreover, any recommendations update was guaranteed in case of new evidence from the literature. Thanks to the MD certification, and to multilanguage translations, SurPass v2.0 was implemented in the clinical practice of six clinical sites in as many European countries (i.e. Austria 1 , Belgium, Germany, Italy, Lithuania, and Spain) in a multi-country implementation study. Results of the study will be reported elsewhere. Additional languages (Hungarian, Croatian and Danish) are being added, supported by charities and the on-going European e-QuoL project (grant number 101136549). SurPass v2.0 was also further improved with features to support interoperability with other EHIS by using HL7-FHIR standard. A dedicated PanCareSurPass HL7-FHIR IG was created to define the technical specifications, data workflows, mapping rules, and terminologies for data exchange with the SurPass platform, available at: https://hl7.eu/fhir/ig/pcsp/ (18). For its design, several international initiatives as the HL7 International Patient Summary (IPS) FHIR IG (https://build.fhir.org/ig/HL7/fhir-ips) and HL7 minimal Common Oncology Data Elements (mCODE) FHIR IG (https://build.fhir.org/ig/HL7/fhir-mCODE-ig/) were considered. As in Figure 2, the TS of any CCS eligible to receive the SurPass can be generated by means of the HL7-FHIR resources, provided that the treating institution had stored treatment data on its EHIS and had made it interoperable with the SurPass v2.0 platform through the FHIR server according to the IG. Otherwise, in case an EHIS is not available at a given clinic, direct manual data entry in the SurPass v2.0 platform is also possible (Figure 2). After inclusion of demographic and treatment data, and validation by the treating HCP, the personalized recommendation section is automatically proposed by the algorithms built into the SurPass platform. The platform allows further modifications of the recommendations based on certain clinical circumstances. For example, this applies to the situation when a given complication (e.g. thyroid dysfunction) is already present at the moment of SurPass delivery. In this case, the personalized recommendation is revised and proposed based on specialist indications. Changes may also occur when a specific family history warrants a specific screening program, after a shared decision with the survivor. The final individualized SurPass can be retrieved by the treating institution, either in a structured format to be included in the institutional electronic health record and further transferred to the national/regional Electronic Health Platforms (where available) or as a .pdf document (Figure 2). Depending on local/national health system organizations, survivors can access and download their SurPass in a computer readable format either accessing their electronic health platform, the institutional health record or the SurPass secure platform. To do this, HCPs have to activate user credentials by generating a password reset link sent directly to the CCS email (or parents, where required). (Figure 2). Figure 3 depicts few pages of a SurPass delivered to a fictional survivor (full SurPass available as attachment). After reporting of the demographic and TS information, there is an introductory text to the Recommendations section (10) that summarizes the guideline development methodology, followed by general recommendations for lifestyle guidance and self-referring to an HCP in case of symptoms (e.g. lumps and bumps, persistent pain or any new symptom experienced). Following the introductory text and the general recommendations, the personalized recommendations are reported, structured in a table format as follows: i) you may be at risk of (e.g. pulmonary problems); ii) because you were treated with (e.g. radiotherapy involving the lungs), iii) therefore, it is recommended to (e.g. perform pulmonary function tests) as from the IGHG/PanCare recommendations (9). The platform was designed in a way that in the personalized SCP of each survivor, only the exposure which activated the algorithm is mentioned in the SurPass in the section “because you were treated with …”. The SurPass v1.2 was delivered at IGG as part of the PanCareFollowUp Care intervention study, where 207 CCS were included in the study (Table 3). They were diagnosed at a median age of 6.5 years (IQR: 3.6–11.7), and received their SurPass at a median age of 22.7 years (IQR: 19.6–28.3), after 14.9 years (IQR: 10.8–19.9) since end of treatment. Based on their TS, 3,561 recommendations were automatically suggested by the SurPass platform (median 16 recommendation per CCS, IQR 13-21). Among these, 1,917 (54%) recommended surveillances without screening tests (median 9 recommendation per CCS, IQR 8-11) and the remaining 1,644 (46%), recommended a screening test (median 7 recommendation per CCS, IQR 5-11). Table 4 reports details of the recommendations with screening test automatically suggested by the platform and the subsequent actions taken by the HCP to further personalize the SurPass based on the CCS’ medical history. Recommendations addressing endocrine and fertility problems were the most frequently suggested (n=531; 32.2%) followed by those for metabolic problems (n=220; 13.3%), cardiac problems (n=190; 11.5%) and subsequent malignant neoplasms (n=173;10.5%). At the moment of SurPass delivery, 236 (14.3%) recommendations suggested by algorithms were further individualized or deselected by the HCP because of particular conditions already present in the CCS, as: i) had already developed a specific late-effect, ii) already enrolled in a more intensive and specific screening program, iii) found already within normal values for a screening test to be performed only once after the end of treatment (Table 4). Deselection because of a condition that existed before the delivery of the Surpass occurred in 131 (8.0%) of the cases, the most frequent being those addressing endocrine and fertility problems. Eleven further recommendations were deselected and modified since the survivor was already in a more intensive screening program. Of these, nine patients had multiple thyroid nodules, one had a family history for thyroid cancer, and one had a renal insufficiency which was already present at the moment of cancer diagnosis. Normal values of ferritin (iron overload) and of liver enzymes (liver injury) lead to the deselection of 94 (8.0%) further recommendations. Eventually 1,411 recommendations with screening test were delivered, Of the 207 survivors who received their SurPass, 48% accessed the SurPass platform through their credentials. Discussion The digital SurPass was developed with the intention of providing the CCS population with an accessible and personalized document that can be shared with their family doctor or other HCPs, when needed, as well as to support the critical transition period from paediatric to adult care. Indeed, there is substantial evidence that CCS represent a vulnerable population with an increased risk of developing over their lifetime one or more chronic conditions of variable severity, which may affect their quality of life and life expectancy (3,19). The SurPass allows clinicians to deliver tailored follow-up recommendations and supports equity in LTFU by being easily accessible to survivors any time and implemented with algorithms linked to internationally approved LTFU guidelines, thus reducing variability in LTFU practice through the automated suggestion of recommendations (20). Other similar tools with built-in algorithms dedicated to CCS have been reported in the literature, such as the Passport for Care in North America (21), LOG-After in France (22), and the Kaiku health platform in Finland (23). The reference guidelines used in these tools are those of the respective national study groups (24,25,26). Both LOG-after (27) and SurPass (11) utilise the IGHG/PanCare guidelines. SurPass, furthermore, features HL7-FHIR interoperability and a robust multilingual implementation to facilitate the use of a single tool across Europe within different health system organizations, as well as languages. In fact, IGHG/PanCare guidelines are well suited to such a broad application as they recognize that the suggested screening modality might not be easily accessible through all national health systems and thus provide an expert opinion on the best alternative (28, 9). To realize the ambition of making SurPass available to all European countries, challenges related to cross-border transfer of personal health data according the European General Data Protection Regulation (GDPR) had to be addressed (17) as the servers of the SurPass platform at Cineca are located in Italy. Bilateral agreements between the IT company Cineca and the clinical sites in PanCareSurPass had to be signed to allow data transfer in research settings and pseudonymization where required by national regulations. Cross-border data transfer remains a challenge for future scale-up of the SurPass, however, the full implementation of the recently launched European Health Data Space Regulation (EHDS) (29) should contribute to streamlining the management of medical data at a European level. Another unique feature of SurPass v2.0 is that it is certified as a MD, demonstrating compliance with essential safety and performance standards, thus allowing its use in clinical (and not only research) practice. MD certification binds the IT supplier to post-marketing MD regulatory requirements. Since understanding of late effects after childhood cancer is constantly evolving as a new field, guidelines are regularly reviewed and updated, whenever required, as new evidence comes to light (11, 28, 30). In parallel, the SurPass then also needs continuous maintenance and updates following guideline updates. When new evidence-based recommendations or update of existing ones are published, the PanCare Guidelines Group of the PanCare Society (https://www.pancare.eu/groups/guideline-group/) has set up a procedure for collaboration with the SurPass IT development team for designing, reviewing, validating, and ultimately implementing algorithms into a new version of the SurPass platform. Importantly, SurPass-v2.0 is a document formed by a set of HL7-FHIR resources, allowing interoperable, secure, and structured health information exchange with institutional, regional/national EHIS. HL7-FHIR standards increase accuracy of data exchange and allow a reduction in the time required to collate data for the TS (31), two factors that are often cited as barriers to the adoption of eHealth tools (32, 33). Saraceno et al. (13) documented the reduction in time for TS generation in a preliminary test of the v2.0 platform in the six PanCareSurPass countries, where, depending on the Country, 30% to 69% of the TS fields were automatically pre-populated. However, interoperability comes with costs, especially in regions or cities where hospitals might use different IT platforms, each one requiring technical and organizational adaptations according to the PanCareSurPass FHIR IG. This adaptation requires financial investment up front; however, this is offset by costs savings due to the reduction in for TS generation. Nevertheless, in settings where interoperability through HL7-FHIR is not yet possible, traditional manual data entry remains a viable option when using the SurPass. Building on experience from EU projects such as PanCareSurPass and the development of its HL7-FHIR IG, some authors have launched a European-level harmonization and standardization effort. This includes the creation of an HL7 Europe Working Group on cancer, whose first initiative is the European Cancer Common Data Model —a minimal yet expandable framework to represent the cancer care journey (https://confluence.hl7.org/spaces/HEU/pages/281282385/Cancer+Common+Model+Project+Edition+1). This model will underpin the HL7 Europe Cancer Common FHIR IG , potentially evolving into an international version aligned with the US mCODE initiative (https://build.fhir.org/ig/HL7/fhir-mCODE-ig/). Such standardization could strengthen SurPass v2.0 interoperability within the EHDS and support its broader adoption. The long-term goal is to align the PanCareSurPass FHIR IG with the European Cancer Common FHIR IG, ensuring consistency across European initiatives. Some additional clinical issues should also be considered when providing a SurPass to survivors or their caregivers. CCS may experience psychological disorders, such as anxiety, depression or post-traumatic stress, which may be triggered or exacerbated by the way the SurPass is presented and discussed (34,6). As found in PanCareFollowUp, in a heterogeneous group of CCS in Italy, an average of 16 recommendations per survivor (9 without screening test, 7 with screening test) were suggested by the platform. This large number of recommendations might result in distress. To avoid any unnecessary psychological burden associated with receiving a SurPass, it is necessary to ensure that the SurPass delivery includes adequate time for the HCP to inform the CCS about personal risks both in terms of relative risk as compared to peers in the general population, but also in terms of absolute risk. With this aim, the PanCare Society has developed Plain Language brochures which are available on its website (https://www.pancare.eu/plain-language-summaries/). (35) The overarching goal is to avoid overwhelming survivors with an extensive list of potential late-effects, especially when some recommendations are more informational (e.g. risk of subsequent leukaemia) than actionable. Several other factors should be considered at the moment of SurPass delivery, such as the CCS age and the foreseen responsibility (centralized or shared with the community) of LTFU care. For example, when delivering a SurPass to a 10-year-old girl, the SurPass platform allows clinicians to decide whether or not exclude recommendations for screening of conditions not expected to occur in a short-to-medium time frame (e.g. subsequent breast cancer). We indeed suggest that when the CCS is approaching the transition from paediatric to adult care, when re-consent for the use of personal data in the SurPass platform is required, the SurPass is updated. At that point, “adult-specific” screening recommendations should also be included in the updated SurPass, while those suggested to be performed only once after the end of treatment (e.g. ferritin values for survivors who received red blood cells transfusions) may be removed. This suggested approach might not be feasible in all settings. For example, if the survivor will no longer be seen at the treating institution, it might be more appropriate to issue a SurPass that includes all recommendations with guidance on the age at which screening should start. When considering the procedure for SurPass delivery, the motto “one size does not fit all” is not appropriate and that decisions around delivery should be based on the individual CCS and the logistics of LTFU care in each setting. Future improvements to the SurPass platform are envisioned. For example, the platform could be made flexible enough to automatically exclude recommendations for screening of conditions already developed by the survivor and to include recommendations for early diagnosis of possible recurrences of the original cancer. The automatic exclusion of screenings for conditions already developed by the survivor will be possible after a specific (CTCAE adapted) coding system for chronic conditions will be approved and implemented in a follow-up form. The draft vocabulary for chronic conditions is already in a test phase at selected centres of the AIEOP network and will be implemented in the algorithms as soon as the coding system will be approved and published in a peer reviewed journal. For screening recommendations for recurrences of the original cancer, they are often protocol-specific and since most childhood cancer patients are enrolled in clinical trials, their oncologic follow-up should be adherent to protocol recommendations. A similar consideration may be made for screening of subsequent neoplasms in subjects with a cancer predisposition syndrome. In case of non-concordance between the IGHG/PanCare and the syndrome-specific recommendations for a given neoplasm, it would be the responsibility of the oncology and survivorship team, including the clinical geneticist, to discuss the potential advantages and disadvantages with the survivor and eventually reach a shared decision about the most appropriate LTFU approach. In conclusion, the solid collaboration of PanCare, backed by the European Commission, has driven the development of SurPass v2.0 as an important platform that can provide care equity in personalized LTFU of European CCS and harmonise the activities of late-effects clinics. Future developments may include the implementation of a SurPass specific mobile app, which may be integrated in the Cancer Survivor Smart Card as envisioned by the Europe’s Beating Cancer Plan (36). Declarations CONFLICT OF INTEREST STATEMENT The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. Funding: PanCareFollowUp: The project has received funding from the European Union's Horizon 2020 research and innovation program under grant agreement No 824982. PanCareSurPass: This project has received funding from the European Union’s Horizon 2020 research and innovation program under grant agreement No 899999. MM, FB, BN, AB, SO, RT, and RH acknowledge funding from the OPEN OdV, SurPass-DOPO project and from the Italian Ministry of Health (NET-2016-02363858 grant). Disclaimer The material presented and views expressed here are the responsibility of the author(s) only. The EU Commission takes no responsibility for any use made of the information set out. Acknowledgement: We thank Dr. Ana Carolina Izurieta Pacheco for her insights during the preparation of the manuscript. References Tonorezos ES, Barnea D, Cohn RJ, Cypriano MS, Fresneau BC, Haupt R, Hjorth L, Ishida Y, Kruseova J, Kuehni CE, Kurkure PA, Langer T, Nathan PC, Skeen JE, Skinner R, Tacyildiz N, van den Heuvel-Eibrink MM, Winther JF, Hudson MM, Oeffinger KC. Models of Care for Survivors of Childhood Cancer From Across the Globe: Advancing Survivorship Care in the Next Decade. 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Filbert AL, Kremer L, Ladenstein R, Chronaki C, Degelsegger-Márquez A, van der Pal H, Bardi E, Uyttebroeck A, Langer T, Muraca M, Nieto AC, Rascon J, Bagnasco F, Beyer S, Te Dorsthorst J, Essiaf S, Galan AO, Kienesberger A, O'Brien K, Palau MC, Pluijm SMF, di Profio S, Saraceno D, Schneider C, Schreier G, Trinkūnas J, Zamberlan I, Grabow D, Haupt R; PanCareSurPass consortium. Scaling up and implementing the digital Survivorship Passport tool in routine clinical care - The European multidisciplinary PanCareSurPass project. Eur J Cancer. 2024 May;202:114029. doi: 10.1016/j.ejca.2024.114029. Epub 2024 Mar 19. PMID: 38513384. van Kalsbeek RJ, van der Pal HJH, Kremer LCM, Bardi E, Brown MC, Effeney R, Winther JF, Follin C, den Hartogh J, Haupt R, Hjorth L, Kepak T, Kepakova K, Levitt G, Loonen JJ, Mangelschots M, Muraca M, Renard M, Sabic H, Schneider CU, Uyttebroeck A, Skinner R, Mulder RL. 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Research Square. https://doi.org/10.21203/rs.3.rs-3045766/v1 Mulder RL, Hudson MM, Bhatia S, Landier W, Levitt G, Constine LS, Wallace WH, van Leeuwen FE, Ronckers CM, Henderson TO, Moskowitz CS, Friedman DN, Ng AK, Jenkinson HC, Demoor-Goldschmidt C, Skinner R, Kremer LCM, Oeffinger KC. Updated Breast Cancer Surveillance Recommendations for Female Survivors of Childhood, Adolescent, and Young Adult Cancer From the International Guideline Harmonization Group. J Clin Oncol. 2020 Dec 10;38(35):4194-4207. doi: 10.1200/JCO.20.00562. Epub 2020 Sep 29. PMID: 33078972; PMCID: PMC7723685. European Health Data Space Regulation - https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space-regulation-ehds_en Ehrhardt MJ, Ward ZJ, Liu Q, Chaudhry A, Nohria A, Border W, Fulbright JM, Mulrooney DA, Oeffinger KC, Nathan PC, Leisenring WM, Constine LS, Gibson TM, Chow EJ, Howell RM, Robison LL, Armstrong GT, Hudson MM, Diller L, Yasui Y, Armenian SH, Yeh JM. 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PMID: 39176620. de Beijer IAE, Hardijzer EC, Haupt R, Grabow D, Balaguer J, Bardi E, Nieto AC, Ciesiūniene A, Düster V, Filbert AL, Gsell H, Kapitančukė M, Ladenstein R, Langer T, Muraca M, van den Oever SR, Prikken S, Rascon J, Tormo MT, Uyttebroeck A, Vercruysse G, van der Pal HJH, Kremer LCM, Pluijm SMF; PanCareSurPass consortium. Correction: Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study. J Cancer Surviv. 2025 Jun;19(3):1111. doi: 10.1007/s11764-024-01547-w. Erratum for: J Cancer Surviv. 2025 Apr;19(2):659-671. doi: 10.1007/s11764-023-01498-8. PMID: 38466480; PMCID: PMC12081557. King JE, O'Connor MC, Shohet E, Krause SM, Scheurer ME, Horowitz ME, Poplack DG, Fordis CM, Gramatges MM. Clinician perceptions of Passport for Care, a web-based clinical decision support tool for survivorship care plan delivery. Pediatr Blood Cancer. 2023 Jan;70(1):e30070. doi: 10.1002/pbc.30070. Epub 2022 Nov 3. PMID: 36326111; PMCID: PMC9701167. Zeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, Armstrong G, Mertens AC, Robison LL, Ness KK. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev. 2008 Feb;17(2):435-46. doi: 10.1158/1055-9965.EPI-07-2541. PMID: 18268128. Selina R. van den Oever, Tessa Fuchs Gill, A. Levitt, Riccardo Haupt, Renée L. Mulder, Ana Amariutei, Edit Bardi, Tom Becker, Morven Brown, Hannah Gsell, Jaap den Hartogh Samira Essiaf,Monica Muraca, Emma Potter, Carina Schneider, Elaine Sugden, Zuzana Tomášiková, Herma Vermeulen, Leontien C.M. Kremer, Roderick Skinner, Helena J.H. van der Pal, on behalf of the PanCareFollowUp consortium1 From long-term follow-up Recommendations for clinical practice to plain language summaries for childhood, adolescent, and young adult cancer survivors. EJC Paediatric Oncology, Volume 3, 100165 Europe’s Beating Cancer Plan - https://health.ec.europa.eu/document/download/26fc415a-1f28-4f5b-9bfa-54ea8bc32a3a_en Tables Tables 1 to 4 are available in the Supplementary Files section. Additional Declarations No competing interests reported. Supplementary Files SurPasstables.docx DetailsConsortiumPCSPePCFU.docx passport.pdf Figure 3 Cite Share Download PDF Status: Under Review Version 1 posted Reviews received at journal 15 May, 2026 Reviewers agreed at journal 30 Apr, 2026 Reviewers agreed at journal 29 Apr, 2026 Reviewers invited by journal 29 Apr, 2026 Editor assigned by journal 28 Apr, 2026 Submission checks completed at journal 28 Apr, 2026 First submitted to journal 21 Apr, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Gaslini","correspondingAuthor":false,"prefix":"","firstName":"Riccardo","middleName":"","lastName":"Haupt^","suffix":""}],"badges":[],"createdAt":"2026-04-21 08:58:15","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9481585/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9481585/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":108914553,"identity":"14fed6d4-00c4-4b6f-8275-6d0b883c8b0f","added_by":"auto","created_at":"2026-05-10 14:58:27","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":279837,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eData schema of the Survivorship Passport\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-9481585/v1/6d0b1b71bbf72a5a06ea8878.png"},{"id":108914555,"identity":"fd014263-dfb8-45c4-9ab0-640ebeac255a","added_by":"auto","created_at":"2026-05-10 14:58:27","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":288421,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eThe Survivorship Passport v 2.0 data flow\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n\u003cp\u003eLegend:\u003c/p\u003e\n\u003cp\u003e1) Treatment summary data are sent via HL7 FHIR to a FHIR server set up at the IT company hosting the SurPass platform;\u003c/p\u003e\n\u003cp\u003e2) In case of incomplete (non-digital) treatment data, they can be directly uploaded in the SurPass platform via manual data entry (as in SurPass v.1.2);\u003c/p\u003e\n\u003cp\u003e3) After TS is approved by the treating institution, the algorithms built into the passport generate the Survivorship Care Plan which is sent to the FHIR server together with the TS (complete SurPass);\u003c/p\u003e\n\u003cp\u003e4) Returned to the treating institution (in an HL7 format either structured or as a .pdf file);\u003c/p\u003e\n\u003cp\u003e5) Where available, the SurPass can be then included in the personal regional or national electronic health platform;\u003c/p\u003e\n\u003cp\u003e6) Survivors can access their SurPass in different ways, based on local Health System organization (either via QR code, direct access to their institutional medical record or via their Health Platform).\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-9481585/v1/81e0f51bfa0535da152c9cb1.png"},{"id":108979749,"identity":"901c95a4-ce6c-43f6-ac91-80e9eb434b5d","added_by":"auto","created_at":"2026-05-11 12:01:10","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":743953,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9481585/v1/872f3c52-4c84-4710-86cd-bf657473d8f6.pdf"},{"id":108977268,"identity":"54397ace-9ffb-443b-a58f-e90be01f83a7","added_by":"auto","created_at":"2026-05-11 11:31:09","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":24226,"visible":true,"origin":"","legend":"","description":"","filename":"SurPasstables.docx","url":"https://assets-eu.researchsquare.com/files/rs-9481585/v1/3745ed6dbdab4191b8829918.docx"},{"id":108977496,"identity":"da923729-32be-4267-a717-202124fc3682","added_by":"auto","created_at":"2026-05-11 11:31:54","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":20764,"visible":true,"origin":"","legend":"","description":"","filename":"DetailsConsortiumPCSPePCFU.docx","url":"https://assets-eu.researchsquare.com/files/rs-9481585/v1/3e2faa7143ab82060dce1ac3.docx"},{"id":108914557,"identity":"e0f947d1-8a10-461a-b2b6-407857f560ab","added_by":"auto","created_at":"2026-05-10 14:58:27","extension":"pdf","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":197763,"visible":true,"origin":"","legend":"\u003cp\u003eFigure 3\u003c/p\u003e","description":"","filename":"passport.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9481585/v1/5c85227f2f70dfde10906227.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"The Survivorship Passport for childhood cancer survivors. Improvements and Experience within several European PanCare projects","fulltext":[{"header":"Introduction","content":"\u003cp\u003eOver the past decades, as treatments have improved, the number of childhood cancer survivors (CCS) has risen, with over 500,000 individuals currently living in Europe and approximately 12,000 new survivors each year (1,2). CCS represent a vulnerable population, at increased risk of developing long-term complications, including organ dysfunction, psychosocial challenges and subsequent malignancies, related to their previous disease and treatment (3). This population may benefit from life-long monitoring for possible long-term complications.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn 2018, in a revision of the Erice Statement published in 2008 (4) in which the concepts of cure and care after childhood cancer were discussed,\u0026nbsp;Jankovic et al.\u0026nbsp;stated that \u0026ldquo;after completion of treatment for the original cancer, it is the responsibility of the paediatric cancer unit to provide the survivor and their parents with a summary of the cancer\u0026rsquo;s characteristics, treatments received and potential long-term complications resulting from the cancer or its treatment\u0026rdquo;\u0026nbsp;(5).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn this framework, the Survivorship Passport (SurPass) was developed by the Cineca IT company, in collaboration with colleagues of the IRCCS Istituto Giannina Gaslini (IGG) in Italy within several EU-funded projects, which involved the PanCare network (6). SurPass is\u0026nbsp;a digital tool that generates a treatment summary (TS) of the clinical history of each CCS, together with personalized recommendations for follow-up based on internationally approved\u0026nbsp;guidelines\u0026nbsp;in a Survivorship Care Plan (SCP).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAfter\u0026nbsp;the release in 2012 of the first version of the SurPass (v1.0), further updates were made, which included: Italian and German translations (ExPorNet project \u0026ndash; v1.0.1); algorithms to generate few personalized recommendations according to evidence-based guidelines (PanCareSurfUp - v1.1), and an Italian version including comprehensive screening recommendations based on expert opinion of the Associazione Italiana di Ematologia ed Oncologia Pediatrica (AIEOP) Late Effects Working Group (v1.1.1).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis manuscript describes the further developments of the SurPass tool, made possible thanks to two subsequent and complementary European projects: PanCareFollowUp (grant number 824982) and PanCareSurPass (grant number 899999), which led to the current version SurPass v2.0.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThe PanCareFollowUp project was conducted between January 2019 and December 2023 while the PanCareSurPass project started in March 2021 and ended in August 2025 (7,8).\u003c/p\u003e\n\u003cp\u003eIn detail, PanCareFollowUp developed the person-centred care intervention approach for standardized LTFU based on the International Guideline Harmonization Group (IGHG - www.ighg.org)/PanCare guidelines and conducted a multi-country study to gain deeper insights into the feasibility and effectiveness of the intervention (7, 9, 10). With this goal, the template of a harmonised SCP was developed comprising an update of the two main components in SurPass v1.1: i) TS; and ii) recommendations for long term surveillance of possible treatment-related complications (9). The harmonized SCP was implemented in SurPass v1.2, which was tested in one clinic in Italy.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn more detail, in SurPass v1.2, the TS variables list of v1.1 was revised, while the coding systems for cancer diagnosis (ICD-O-3 and ICCC-3), chemotherapeutic agents (ATC), congenital conditions (ICD-9 and/or Orphanet) and anatomic areas exposed to radiotherapy (SurPass specific) were maintained as in v1.1 (6). Several other v1.1 functionalities to support clinicians in data entry and in saving time through intelligent auto completion, checks, calculation and guidance were maintained. Among them, the most relevant were the automatic ICCC-3 classification, based on ICD-O-3 morphology and topography codes, and the inclusion of synonyms and commercial names for chemotherapeutic agents, allowing for the standardized assignment of different commercial drug names (e.g., endoxan) to the same ATC-coded compound (e.g., cyclophosphamide).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe recommendations for LTFU are the other main SurPass component and provide each CCS with a personalized long-term screening plan. Recommendations are derived from the evidence-based guidelines published by IGHG (11), further integrated for issues not yet covered by those developed within the PanCareFollowUp project using a pragmatic approach (9). According to the IGHG model, for each guideline related to a potential late complication, the following aspects are \u0026ldquo;translated\u0026ldquo; in the respective recommendation: i) who needs surveillance (i.e. is at risk) for the given complication; ii) which surveillance modality should be used; iii) when surveillance should be initiated and discontinued, if applicable; iv) how often surveillance should be performed and, v) what actions should be taken if abnormalities are detected (11). In general, two main categories of recommendations were defined as those: i) recommending that a healthcare professional (HCP) make survivors aware of the possible late-effects\u0026nbsp;and periodically collects their medical history and/or perform a physical examination without performing surveillance tests, and ii) recommending a surveillance test. For details, see Appendix A in van Kalsbeek et al. (9).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAlgorithms related to the recommendations were implemented in SurPass v1.2 (Table 1 and 2), allowing the SurPass platform to automatically propose a specific screening recommendation if any of the risk factors identified in the guidelines are included in the survivor\u0026rsquo;s TS. The algorithms were coded in the open-source Go programming language using a modular design, allowing for easy modification and extension (12). Validation tests were performed after a preliminary upload of mock cases. For each case, system-generated recommendations were compared with guideline expectations; discrepancies were catalogued, corrected, and verified.\u0026nbsp;A tracking system recorded and monitored\u0026nbsp;technical problems and their resolution (13). SurPass v1.2 was then used at IGG to deliver personalized SurPass to survivors included in the PanCareFollowUp implementation study (10).\u003c/p\u003e\n\u003cp\u003eThe subsequent PanCareSurPass project further developed SurPass from v1.2 to v2.0. Since algorithms implemented in the SurPass platform facilitate the HCPs\u0026rsquo; decision-making process by automatically proposing personalized recommendations for the SCP, during PanCareSurPass (SurPass v2.0), procedures were followed to certify the platform as a medical device (MD). Additionally, to accelerate the process of data retrieval for the completion of the TS and to allow the integration of SurPass in clinical practice, during PanCareSurPass, procedures were established to allow bi-directional data exchange between the new v2.0 platform and institutional Electronic Health Information Systems (EHIS) of the participating clinics. The Health Level Seven International (HL7) Fast Healthcare Interoperability Resources (FHIR) standard (14) was adopted to support interoperability. To ensure consistent implementation across clinics, a dedicated HL7-FHIR Implementation Guide (IG) was developed. After identifying barriers and facilitators for implementation of the SurPass and connection to the IT systems (15-16), SurPass v2.0 was implemented in a multi-country study in six clinics in Austria, Belgium, Germany, Italy, Lithuania and Spain.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eCineca ensured personal data security by implementing all necessary cybersecurity measures, conducting a Data Protection Impact Assessment (DPIA) and ensuring compliance with the European General Data Protection Regulation (GDPR https://gdpr.eu) (17) and with standards for Good Clinical Practice and pseudo-anonymization. The authorization to store personal data both in the SurPass v1.2, as well as 2.0, platform was included in both PanCareFollowUp and PanCareSurPass study protocols, submitted to the Ethics Review Board of each participating institution. Moreover, a bilateral data protection agreement for managing personal data was established between each clinic and Cineca.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eAfter careful consultation with PanCareFollowUp partners, the structure and key components of the SurPass v1.1 template (TS, SCP) were maintained in v1.2 (Figure 1). The TS was implemented with 71 new variables leading to a total of 242 variables in SurPass v1.2 The new variables were mostly pertinent to \u003cem\u003eMajor\u003c/em\u003e\u003cem\u003e\u0026nbsp;surgery\u003c/em\u003e or to the \u003cem\u003eRelevant clinical events\u003c/em\u003e, sub-sections of \u003cem\u003eFront-line treatment\u0026nbsp;\u003c/em\u003e(Figure 1) after being identified by the guidelines as potential risk factors for the development of specific late complication(s) (9). Overall, 47 algorithms were developed to allow the automatic proposal by the platform of personalized recommendations for each survivor. The number of algorithms differs from the number of recommendations as some recommendations required more than one algorithm, either to address different issues included in the same recommendation or to differentiate risk stratification for the outcome, while for other recommendations no algorithm was necessary (Tables 1 and 2). In particular, no algorithms were required for seven recommendations: i) coronary artery disease, as the specific risk factor (chest radiotherapy) and recommendations (control for modifiable cardiovascular risk factors) were already included in all other cardiac-specific recommendations, ii) alopecia, as the condition is visible at the clinical visit, if present, and iii) cancer-related fatigue, iv) health promotion, v) mental health problems, vi) chronic pain, and vii) psychosocial problems, as all CCS are considered at risk for these outcomes and it is good clinical practice to ask specific questions about tiredness, sadness, or school/work performance at each visit. Furthermore, a general statement was included at the beginning of the recommendations section about the importance of healthy lifestyle behaviours and of contacting HCPs in case of any new or persisting symptom (see below).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAs previously mentioned, further improvements and regulatory milestones were included in SurPass v2.0 as part of the PanCareSurPass project. In detail, the platform was certified as Class I MD in accordance with the EU Regulation 2017/745 on medical devices (UDI-DI Code 8059793870019; Italian Ministry of Health # 2328038). Procedures for post-market surveillance were implemented to ensure the tool\u0026rsquo;s safety and effectiveness in real-world applications; moreover, any recommendations update was guaranteed in case of new evidence from the literature. Thanks to the MD certification, and to multilanguage translations, SurPass v2.0 was implemented in the clinical practice of six clinical sites in as many European countries (i.e. Austria\u003ca href=\"#_ftn1\" name=\"_ftnref1\" title=\"\"\u003e\u003c/a\u003e\u003csup\u003e1\u003c/sup\u003e, Belgium, Germany, Italy, Lithuania, and Spain) in a multi-country implementation study. Results of the study will be reported elsewhere. Additional languages (Hungarian, Croatian and Danish) are being added, supported by charities and the on-going European e-QuoL project (grant number 101136549).\u003c/p\u003e\n\u003cp\u003eSurPass v2.0 was also further improved with features to support interoperability with other EHIS by using HL7-FHIR standard. A dedicated PanCareSurPass HL7-FHIR IG was created to define the technical specifications, data workflows, mapping rules, and terminologies for data exchange with the SurPass platform, available at: https://hl7.eu/fhir/ig/pcsp/ (18). For its design, several international initiatives as the HL7 International Patient Summary (IPS) FHIR IG (https://build.fhir.org/ig/HL7/fhir-ips) and HL7 minimal Common Oncology Data Elements (mCODE) FHIR IG (https://build.fhir.org/ig/HL7/fhir-mCODE-ig/) were considered.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAs in Figure 2, the TS of any CCS eligible to receive the SurPass can be generated by means of the HL7-FHIR resources, provided that the treating institution had stored treatment data on its EHIS and had made it interoperable with the SurPass v2.0 platform through the FHIR server according to the IG. Otherwise, in case an EHIS is not available at a given clinic, direct manual data entry in the SurPass v2.0 platform is also possible (Figure 2). After inclusion of demographic and treatment data, and validation by the treating HCP, the personalized recommendation section is automatically proposed by the algorithms built into the SurPass platform. The platform allows further modifications of the recommendations based on certain clinical circumstances. For example, this applies to the situation when a given complication (e.g. thyroid dysfunction) is already present at the moment of SurPass delivery. \u0026nbsp;In this case, the personalized recommendation is revised and proposed based on specialist indications. Changes may also occur when a specific family history warrants a specific screening program, after a shared decision with the survivor.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe final individualized SurPass can be retrieved by the treating institution, either in a structured format to be included in the institutional electronic health record and further transferred to the national/regional Electronic Health Platforms (where available) or as a .pdf document (Figure 2). Depending on local/national health system organizations, survivors can access and download their SurPass in a computer readable format either accessing their electronic health platform, the institutional health record or the SurPass secure platform. To do this, HCPs have to activate user credentials by generating a password reset link sent directly to the CCS email (or parents, where required). (Figure 2).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFigure 3 depicts few pages of a SurPass delivered to a fictional survivor (full SurPass available as attachment). After reporting of the demographic and TS information, there is an introductory text to the Recommendations section (10) that summarizes the guideline development methodology, followed by general recommendations for lifestyle guidance and self-referring to an HCP in case of symptoms (e.g. lumps and bumps, persistent pain or any new symptom experienced). Following the introductory text and the general recommendations, the personalized recommendations are reported, structured in a table format as follows: i) you may be at risk of (e.g. pulmonary problems); ii) because you were treated with (e.g. radiotherapy involving the lungs), iii) therefore, it is recommended to (e.g. perform pulmonary function tests) as from the IGHG/PanCare recommendations (9). The platform was designed in a way that in the personalized SCP of each survivor, only the exposure which activated the algorithm is mentioned in the SurPass in the section \u0026ldquo;because you were treated with \u0026hellip;\u0026rdquo;.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe SurPass v1.2 was delivered at IGG as part of the PanCareFollowUp Care intervention study, where 207 CCS were included in the study (Table 3). They were diagnosed at a median age of 6.5 years (IQR: 3.6\u0026ndash;11.7), and received their SurPass at a median age of 22.7 years (IQR: 19.6\u0026ndash;28.3), after 14.9 years (IQR: 10.8\u0026ndash;19.9) since end of treatment.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eBased on their TS, 3,561 recommendations were automatically suggested by the SurPass platform (median 16 recommendation per CCS, IQR 13-21). Among these, 1,917 (54%) recommended surveillances without screening tests (median 9 recommendation per CCS, IQR 8-11) and the remaining 1,644 (46%), recommended a screening test (median 7 recommendation per CCS, IQR 5-11).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 4 reports details of the recommendations with screening test automatically suggested by the platform and the subsequent actions taken by the HCP to further personalize the SurPass based on the CCS\u0026rsquo; medical history. Recommendations addressing endocrine and fertility problems were the most frequently suggested (n=531; 32.2%) followed by those for metabolic problems (n=220; 13.3%), cardiac problems (n=190; 11.5%) and subsequent malignant neoplasms (n=173;10.5%). At the moment of SurPass delivery, 236 (14.3%) recommendations suggested by algorithms were further individualized or deselected by the HCP because of particular conditions already present in the CCS, as: i) had already developed a specific late-effect, ii) already enrolled in a more intensive and specific screening program, iii) found already within normal values for a screening test to be performed only once after the end of treatment (Table 4).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eDeselection because of a condition that existed before the delivery of the Surpass occurred in 131 (8.0%) of the cases, the most frequent being those addressing endocrine and fertility problems. Eleven further recommendations were deselected and modified since the survivor was already in a more intensive screening program. Of these, nine patients had multiple thyroid nodules, one had a family history for thyroid cancer, and one had a renal insufficiency which was already present at the moment of cancer diagnosis. Normal values of ferritin (iron overload) and of liver enzymes (liver injury) lead to the deselection of 94 (8.0%) further recommendations. Eventually 1,411 recommendations with screening test were delivered, Of the 207 survivors who received their SurPass, 48% accessed the SurPass platform through their credentials.\u0026nbsp;\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe digital SurPass was developed with the intention of providing the CCS population with an accessible and personalized document that can be shared with their family doctor or other HCPs, when needed, as well as to support the critical transition period from paediatric to adult care. Indeed, there is substantial evidence that CCS represent a vulnerable population with an increased risk of developing over their lifetime one or more chronic conditions of variable severity, which may affect their quality of life and life expectancy (3,19). The SurPass allows clinicians to deliver tailored follow-up recommendations and supports equity in LTFU by being easily accessible to survivors any time and implemented with algorithms linked to internationally approved LTFU guidelines, thus reducing variability in LTFU practice through the automated suggestion of recommendations (20).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOther similar tools with built-in algorithms dedicated to CCS have been reported in the literature, such as the Passport for Care in North America (21), LOG-After in France (22), and the Kaiku health platform in Finland (23). The reference guidelines used in these tools are those of the respective national study groups (24,25,26). Both LOG-after (27) and SurPass (11) utilise the IGHG/PanCare guidelines. SurPass, furthermore,\u0026nbsp;features HL7-FHIR interoperability and a robust multilingual implementation\u0026nbsp;to facilitate the use of a single tool across Europe within different health system organizations, as well as languages. In fact, IGHG/PanCare guidelines are well suited to such a broad application as they recognize that the suggested screening modality might not be easily accessible through all national health systems and thus provide an expert opinion on the best alternative (28, 9).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo realize the ambition of making SurPass available to all European countries, challenges related to cross-border transfer of personal health data according the European General Data Protection Regulation (GDPR) had to be addressed (17) as the servers of the SurPass platform at Cineca are located in Italy. Bilateral agreements between the IT company Cineca and the clinical sites in PanCareSurPass had to be signed to allow data transfer in research settings and pseudonymization where required by national regulations. Cross-border data transfer remains a challenge for future scale-up of the SurPass, however, the full implementation of the recently launched European Health Data Space Regulation (EHDS) (29) should contribute to streamlining the management of medical data at a European level.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAnother unique feature of SurPass v2.0 is that it is certified as a MD, demonstrating compliance with essential safety and performance standards, thus allowing its use in clinical (and not only research) practice. MD certification binds the IT supplier to post-marketing MD regulatory requirements. Since understanding of late effects after childhood cancer is constantly evolving as a new field, guidelines are regularly reviewed and updated, whenever required, as new evidence comes to light (11, 28, 30). In parallel, the SurPass then also needs continuous maintenance and updates following guideline updates. When new evidence-based recommendations or update of existing ones are published, the PanCare Guidelines Group of the PanCare Society (https://www.pancare.eu/groups/guideline-group/) has set up a procedure for collaboration with the SurPass IT development team for designing, reviewing, validating, and ultimately implementing algorithms into a new version of the SurPass platform.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eImportantly, SurPass-v2.0 is a document formed by a set of HL7-FHIR resources, allowing interoperable, secure, and structured health information exchange with institutional, regional/national EHIS. HL7-FHIR standards increase accuracy of data exchange and allow a reduction in the time required to collate data for the TS (31), two factors that are often cited as barriers to the adoption of eHealth tools (32, 33). Saraceno et al. (13) documented the reduction in time for TS generation in a preliminary test of the v2.0 platform in the six PanCareSurPass countries, where, depending on the Country, 30% to 69% of the TS fields were automatically pre-populated. However, interoperability comes with costs, especially in regions or cities where hospitals might use different IT platforms, each one requiring technical and organizational adaptations according to the PanCareSurPass FHIR IG. This adaptation requires financial investment up front; however, this is offset by costs savings due to the reduction in for TS generation. Nevertheless, in settings where interoperability through HL7-FHIR is not yet possible, traditional manual data entry remains a viable option when using the SurPass.\u003c/p\u003e\n\u003cp\u003eBuilding on experience from EU projects such as PanCareSurPass and the development of its HL7-FHIR IG, some authors have launched a European-level harmonization and standardization effort. This includes the creation of an HL7 Europe Working Group on cancer, whose first initiative is the \u003cstrong\u003eEuropean Cancer Common Data Model\u003c/strong\u003e\u0026mdash;a minimal yet expandable framework to represent the cancer care journey (https://confluence.hl7.org/spaces/HEU/pages/281282385/Cancer+Common+Model+Project+Edition+1). This model will underpin the \u003cstrong\u003eHL7 Europe Cancer Common FHIR IG\u003c/strong\u003e, potentially evolving into an international version aligned with the US \u003cstrong\u003emCODE\u003c/strong\u003e initiative (https://build.fhir.org/ig/HL7/fhir-mCODE-ig/). Such standardization could strengthen \u003cstrong\u003eSurPass v2.0\u003c/strong\u003e interoperability within the \u003cstrong\u003eEHDS\u003c/strong\u003e and support its broader adoption. The long-term goal is to align the \u003cstrong\u003ePanCareSurPass FHIR IG\u003c/strong\u003e with the European Cancer Common FHIR IG, ensuring consistency across European initiatives.\u003c/p\u003e\n\u003cp\u003eSome additional clinical issues should also be considered when providing a SurPass to survivors or their caregivers.\u0026nbsp;CCS may experience psychological disorders, such as anxiety, depression or post-traumatic stress, which may be triggered or exacerbated by the way the SurPass is presented and discussed (34,6).\u0026nbsp;As found in PanCareFollowUp, in a heterogeneous group of CCS in Italy, an average of 16 recommendations per survivor (9 without screening test, 7 with screening test) were suggested by the platform. This large number of recommendations might result in distress. To avoid any unnecessary psychological burden associated with receiving a SurPass, it is necessary to ensure that the SurPass delivery includes\u0026nbsp;adequate time for the HCP to inform the CCS about personal risks both in terms of relative risk as compared to peers in the general population, but also in terms of absolute risk. With this aim, the PanCare Society has developed Plain Language brochures which are available on its website (https://www.pancare.eu/plain-language-summaries/). (35) The overarching goal is to avoid overwhelming survivors with an extensive list of potential late-effects, especially when some recommendations are more informational (e.g. risk of subsequent leukaemia) than actionable.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSeveral other factors should be considered at the moment of SurPass delivery, such as the CCS age and the foreseen responsibility (centralized or shared with the community) of LTFU care. For example, when delivering a SurPass to a 10-year-old girl,\u0026nbsp;the SurPass platform allows clinicians\u0026nbsp;to decide whether or not exclude recommendations for screening of conditions not expected to occur in a short-to-medium time frame (e.g. subsequent breast cancer). We indeed suggest that when the CCS is approaching the transition from paediatric to adult care, when re-consent for the use of personal data in the SurPass platform is required, the SurPass is updated. At that point, \u0026ldquo;adult-specific\u0026rdquo; screening recommendations should also be included in the updated SurPass, while those suggested\u0026nbsp;to be performed only once after the end of treatment (e.g. ferritin values for survivors who received red blood cells transfusions) may be removed.\u0026nbsp;This suggested approach might not be feasible in all settings. For example, if the survivor will no longer be seen at the treating institution, it might be more appropriate to issue a SurPass that includes all recommendations with guidance on the age at which screening should start. When considering the procedure for SurPass delivery, the motto \u0026ldquo;one size does not fit all\u0026rdquo; is not appropriate and that decisions around delivery should\u0026nbsp;be based on the individual CCS and the logistics of LTFU care in each setting.\u003c/p\u003e\n\u003cp\u003eFuture improvements to the SurPass platform are envisioned. For example, the platform could be made flexible enough to automatically exclude recommendations for screening of conditions already developed by the survivor and to include recommendations for early diagnosis of possible recurrences of the original cancer. The automatic exclusion of screenings for conditions already developed by the survivor will be possible after a specific (CTCAE adapted) coding system for chronic conditions will be approved and implemented in a follow-up form. The draft vocabulary for chronic conditions is already in a test phase at selected centres of the AIEOP network and will be implemented in the algorithms as soon as the coding system will be approved and published in a peer reviewed journal. For screening recommendations for recurrences of the original cancer, they are often protocol-specific and since most childhood cancer patients are enrolled in clinical trials, their oncologic follow-up should be adherent to protocol recommendations. A similar consideration may be made for screening of subsequent neoplasms in subjects with a\u0026nbsp;cancer predisposition syndrome. In case of non-concordance between the IGHG/PanCare and the syndrome-specific recommendations for a given neoplasm, it would be the responsibility of the oncology and survivorship team, including the clinical geneticist, to discuss the potential advantages and disadvantages with the survivor and eventually reach a shared decision about the most appropriate LTFU approach.\u003c/p\u003e\n\u003cp\u003eIn conclusion, the solid collaboration of PanCare, backed by the European Commission, has driven the development of SurPass v2.0 as an important platform that can provide care equity in personalized LTFU of European CCS and harmonise the activities of late-effects clinics. Future developments may include the implementation of a SurPass specific mobile app, which may be integrated in the Cancer Survivor Smart Card as envisioned by the Europe\u0026rsquo;s Beating Cancer Plan (36).\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eCONFLICT OF INTEREST STATEMENT\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u003c/strong\u003e\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003ePanCareFollowUp: The project has received funding from the European Union\u0026apos;s Horizon 2020 research and innovation program under grant agreement No 824982.\u003c/li\u003e\n \u003cli\u003ePanCareSurPass: This project has received funding from the European Union\u0026rsquo;s Horizon 2020 research and innovation program under grant agreement No 899999.\u003c/li\u003e\n \u003cli\u003eMM, FB, BN, AB, SO, RT, and RH acknowledge funding from the OPEN OdV, SurPass-DOPO project and from the Italian Ministry of Health (NET-2016-02363858 grant).\u0026nbsp;\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e\u003cstrong\u003eDisclaimer\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe material presented and views expressed here are the responsibility of the author(s) only. The EU Commission takes no responsibility for any use made of the information set out.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgement:\u003c/strong\u003e We thank Dr. Ana Carolina Izurieta Pacheco for her insights during the preparation of the manuscript.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eTonorezos ES, Barnea D, Cohn RJ, Cypriano MS, Fresneau BC, Haupt R, Hjorth L, Ishida Y, Kruseova J, Kuehni CE, Kurkure PA, Langer T, Nathan PC, Skeen JE, Skinner R, Tacyildiz N, van den Heuvel-Eibrink MM, Winther JF, Hudson MM, Oeffinger KC. Models of Care for Survivors of Childhood Cancer From Across the Globe: Advancing Survivorship Care in the Next Decade. J Clin Oncol. 2018 Jul 20;36(21):2223-2230. doi: 10.1200/JCO.2017.76.5180. Epub 2018 Jun 6. 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PMID: 32860665.\u003c/li\u003e\n\u003cli\u003eChidren Oncology Group in North America - https://www.childrensoncologygroup.org/\u003c/li\u003e\n\u003cli\u003ethe Soci\u0026eacute;t\u0026eacute; Fran\u0026ccedil;aise Cancers Enfant in France - https://sf-cancers-enfant.com/ \u003c/li\u003e\n\u003cli\u003ethe FICAN West model of follow-up in Finland - https://ficanwest.fi/en/\u003c/li\u003e\n\u003cli\u003eChauvet, S., Bertrand, A., Carausu, L., Delehaye, F., Lejeune, J., Rouger, Schneider, P., Thomas, C., Millot, Laroque, C., Leseur, J., Missohou, F., Supiot, S., Bihannic, N., Debroise, I., Jeanneaud, C., Lebreton, E., Roumy, M., Vincent, M., \u0026amp; Leonard, M. (2023). The LOG-after French Childhood Cancer Cohort: acute to long-term follow-up. Methodology of the LOG-after cohort, a database to help in the medium- and long-term care of patients. A GOCE study (Grand Ouest Cancers de l\u0026rsquo;Enfant, Childhood Cancer, West France) plus other French hospitals [Preprint]. Research Square. https://doi.org/10.21203/rs.3.rs-3045766/v1\u003c/li\u003e\n\u003cli\u003eMulder RL, Hudson MM, Bhatia S, Landier W, Levitt G, Constine LS, Wallace WH, van Leeuwen FE, Ronckers CM, Henderson TO, Moskowitz CS, Friedman DN, Ng AK, Jenkinson HC, Demoor-Goldschmidt C, Skinner R, Kremer LCM, Oeffinger KC. Updated Breast Cancer Surveillance Recommendations for Female Survivors of Childhood, Adolescent, and Young Adult Cancer From the International Guideline Harmonization Group. J Clin Oncol. 2020 Dec 10;38(35):4194-4207. doi: 10.1200/JCO.20.00562. Epub 2020 Sep 29. PMID: 33078972; PMCID: PMC7723685.\u003c/li\u003e\n\u003cli\u003eEuropean Health Data Space Regulation - https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space-regulation-ehds_en\u003c/li\u003e\n\u003cli\u003eEhrhardt MJ, Ward ZJ, Liu Q, Chaudhry A, Nohria A, Border W, Fulbright JM, Mulrooney DA, Oeffinger KC, Nathan PC, Leisenring WM, Constine LS, Gibson TM, Chow EJ, Howell RM, Robison LL, Armstrong GT, Hudson MM, Diller L, Yasui Y, Armenian SH, Yeh JM. Cost-Effectiveness of the International Late Effects of Childhood Cancer Guideline Harmonization Group Screening Guidelines to Prevent Heart Failure in Survivors of Childhood Cancer. J Clin Oncol. 2020 Nov 20;38(33):3851-3862. doi: 10.1200/JCO.20.00418. Epub 2020 Aug 14. PMID: 32795226; PMCID: PMC7676889. \u003c/li\u003e\n\u003cli\u003eGazzarata R, Str\u0026uuml;bin M, Chronaki C, Cangioli G, Saraceno D, Schreier G, Beyer S, Trauner F, Gredinger G, Ladenstein R, Ae de Beijer I, Cavalca G, Trinkunas J, Cervero Beltran L, Vanautgaerden M, Kock-Schoppenhauer AK, Neumann A, Muraca M, Filbert AL, Haupt R, Grabow D; PanCareSurPass Consortium. Childhood Cancer Survivorship Passport Challenges in the European Health Data Space. Stud Health Technol Inform. 2024 Aug 22;316:1302-1306. doi: 10.3233/SHTI240651. PMID: 39176620.\u003c/li\u003e\n\u003cli\u003ede Beijer IAE, Hardijzer EC, Haupt R, Grabow D, Balaguer J, Bardi E, Nieto AC, Ciesiūniene A, D\u0026uuml;ster V, Filbert AL, Gsell H, Kapitančukė M, Ladenstein R, Langer T, Muraca M, van den Oever SR, Prikken S, Rascon J, Tormo MT, Uyttebroeck A, Vercruysse G, van der Pal HJH, Kremer LCM, Pluijm SMF; PanCareSurPass consortium. Correction: Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study. J Cancer Surviv. 2025 Jun;19(3):1111. doi: 10.1007/s11764-024-01547-w. Erratum for: J Cancer Surviv. 2025 Apr;19(2):659-671. doi: 10.1007/s11764-023-01498-8. PMID: 38466480; PMCID: PMC12081557.\u003c/li\u003e\n\u003cli\u003eKing JE, O\u0026apos;Connor MC, Shohet E, Krause SM, Scheurer ME, Horowitz ME, Poplack DG, Fordis CM, Gramatges MM. Clinician perceptions of Passport for Care, a web-based clinical decision support tool for survivorship care plan delivery. Pediatr Blood Cancer. 2023 Jan;70(1):e30070. doi: 10.1002/pbc.30070. Epub 2022 Nov 3. PMID: 36326111; PMCID: PMC9701167.\u003c/li\u003e\n\u003cli\u003eZeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, Armstrong G, Mertens AC, Robison LL, Ness KK. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev. 2008 Feb;17(2):435-46. doi: 10.1158/1055-9965.EPI-07-2541. PMID: 18268128.\u003c/li\u003e\n\u003cli\u003eSelina R. van den Oever, Tessa Fuchs Gill, A. Levitt, Riccardo Haupt, Ren\u0026eacute;e L. Mulder, Ana Amariutei, Edit Bardi, Tom Becker, Morven Brown, Hannah Gsell, Jaap den Hartogh Samira Essiaf,Monica Muraca, Emma Potter, Carina Schneider, Elaine Sugden, Zuzana Tom\u0026aacute;\u0026scaron;ikov\u0026aacute;, Herma Vermeulen, Leontien C.M. Kremer, Roderick Skinner, Helena J.H. van der Pal, on behalf of the PanCareFollowUp consortium1 From long-term follow-up Recommendations for clinical practice to plain language summaries for childhood, adolescent, and young adult cancer survivors. EJC Paediatric Oncology, Volume 3, 100165 \u003c/li\u003e\n\u003cli\u003eEurope\u0026rsquo;s Beating Cancer Plan - https://health.ec.europa.eu/document/download/26fc415a-1f28-4f5b-9bfa-54ea8bc32a3a_en\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTables 1 to 4 are available in the Supplementary Files section.\u003c/p\u003e\n"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"journal-of-cancer-survivorship","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jcsu","sideBox":"Learn more about [Journal of Cancer Survivorship](https://www.springer.com/journal/11764)","snPcode":"11764","submissionUrl":"https://submission.nature.com/new-submission/11764/3","title":"Journal of Cancer Survivorship","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Childhood cancer survivors, Survivorship, Long-term follow-up, Late effects, Cancer treatment summary, Personalized survivorship care, Care Plan, PanCareSurPass, PanCareFollowUp, Data standardization, Interoperability, HL7-FHIR, HL7 Europe Cancer Common Data Model, European Health Data Space","lastPublishedDoi":"10.21203/rs.3.rs-9481585/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9481585/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground/Purpose:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAs 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 in a Survivorship Care Plan. Updates to SurPass, from version v1.1 to v2.0, were made possible through two complementary European-funded projects: PanCareFollowUp and PanCareSurPass.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWithin PanCareFollowUp, the SurPass was updated with new variables and algorithms based on International Guideline Harmonization Group/PanCare guidelines and tested in one clinic in Italy. 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe current SurPass v2.0 includes 242 variables for the TS and 47 algorithms for generation of the SCP. It is certified as Class I MD and supports both manual and semi-automatic data entry through the adoption of Health Level Seven International Fast Healthcare Interoperability Resources. Experience with SurPass delivery to 207 CCS in Italy is also reported.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSurPass represents a useful digital tool enabling evidence-based, equitable, personalized LTFU care for European CCS, with significant benefits for delivery of long-term care as well in the transition period from paediatric to adult care. \u0026nbsp;Future integration of the SurPass in a mobile app as the Cancer Survivor Smart Card announced by the European Commission will further facilitate long term care of CCS.\u003c/p\u003e","manuscriptTitle":"The Survivorship Passport for childhood cancer survivors. Improvements and Experience within several European PanCare projects","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-05-10 14:58:23","doi":"10.21203/rs.3.rs-9481585/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2026-05-15T13:59:29+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"313617638909683468449473373715372604552","date":"2026-04-30T19:03:09+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"330383176625278352294330489517696920568","date":"2026-04-29T15:40:53+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-04-29T12:56:03+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-04-28T08:59:29+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-04-28T08:59:14+00:00","index":"","fulltext":""},{"type":"submitted","content":"Journal of Cancer Survivorship","date":"2026-04-21T08:46:09+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-cancer-survivorship","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jcsu","sideBox":"Learn more about [Journal of Cancer Survivorship](https://www.springer.com/journal/11764)","snPcode":"11764","submissionUrl":"https://submission.nature.com/new-submission/11764/3","title":"Journal of Cancer Survivorship","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"e14b20af-02f8-495b-9d29-c16245131a92","owner":[],"postedDate":"May 10th, 2026","published":true,"recentEditorialEvents":[{"type":"editorInvitedReview","content":"","date":"2026-05-15T13:59:29+00:00","index":12,"fulltext":""},{"type":"reviewerAgreed","content":"313617638909683468449473373715372604552","date":"2026-04-30T19:03:09+00:00","index":11,"fulltext":""},{"type":"reviewerAgreed","content":"330383176625278352294330489517696920568","date":"2026-04-29T15:40:53+00:00","index":10,"fulltext":""}],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-05-10T14:58:23+00:00","versionOfRecord":[],"versionCreatedAt":"2026-05-10 14:58:23","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9481585","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9481585","identity":"rs-9481585","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}