Riccardo Haupt1, Samira Essiaf2, Chiara Dellacasa3, Cecile M Ronckers4, Silvia Caruso5, Elaine Sugden6, Lorna Zadravec Zaletel7, Monica Muraca5, Vera Morsellino8, Anita Kienesberger9, Anne Blondeel2, Davide Saraceno3, Maurizio Ortali3, Leontien C M Kremer4, Roderick Skinner10, Jelena Roganovic11, Francesca Bagnasco5, Gill A Levitt12, Marisa De Rosa3, Martin Schrappe13, Lars Hjorth14, Ruth Ladenstein15. 1. Epidemiology and Biostatistics Unit, IRCCS Istituto Giannina Gaslini, Genova, Italy. Electronic address: riccardohaupt@gaslini.org. 2. The European Society for Paediatric Oncology (SIOPE), Brussels, Belgium. 3. Inter-University Consortium Cineca, Casalecchio di Reno (BO), Italy. 4. Department of Paediatric Oncology, Emma Children's Hospital, Academic Medical Center, Amsterdam, Netherlands; Princess Maxima Center for Pediatric Oncology, Utrecht, Netherlands. 5. Epidemiology and Biostatistics Unit, IRCCS Istituto Giannina Gaslini, Genova, Italy. 6. PanCare, Oxford, UK. 7. Institute of Oncology, Department of Radiation Oncology, Ljubljana, Slovenia. 8. Department of Hematology and Oncology, Istituto Giannina Gaslini, Genova, Italy. 9. Austrian Childhood Cancer Organisation on behalf of CCI (Childhood Cancer International), Vienna, Austria. 10. Department of Paediatric and Adolescent Haematology and Oncology, Children's BMT Unit, Great North Children's Hospital, Royal Victoria Infirmary, Newcastle upon Tyne, UK. 11. Department of Pediatrics, Division of Hematology and Oncology, Clinical Hospital Centre Rijeka, Rijeka, Croatia. 12. Department of Haematology/Oncology, Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London, UK. 13. Department of Paediatrics, Christian-Albrechts-University Kiel and University Medical Center Schleswig-Holstein, Kiel, Germany. 14. Lund University, Skane University Hospital, Department of Clinical Sciences Lund, Paediatrics, Lund, Sweden. 15. St. Anna Children's Cancer Research Institute, Vienna, Austria.
Abstract
BACKGROUND: Currently, there are between 300,000 and 500,000 childhood cancer survivors (CCSs) in Europe. A significant proportion is at high risk, and at least 60% of them develop adverse health-related outcomes that can appear several years after treatment completion. Many survivors are unaware of their personal risk, and there seems to be a general lack of information among healthcare providers about pathophysiology and natural history of treatment-related complications. This can generate incorrect or delayed diagnosis and treatments. METHOD: The Survivorship Passport (SurPass) consists of electronic documents, which summarise the clinical history of the childhood or adolescent cancer survivor. It was developed by paediatric oncologists of the PanCare and SIOPE networks and IT experts of Cineca, together with parents, patients, and survivors' organisations within the European Union-funded European Network for Cancer research in Children and Adolescents. It consists of a template of a web-based, simply written document, translatable in all European languages, to be given to each CCS. The SurPass provides a summary of each survivor's clinical history, with detailed information about the original cancer and of treatments received, together with personalised follow-up and screening recommendations based on guidelines published by the International Guidelines Harmonization Group and PanCareSurFup. RESULTS: The SurPass data schema contains a maximum of 168 variables and uses internationally approved nomenclature, except for radiotherapy fields, where a new classification was defined by radiotherapy experts. The survivor-specific screening recommendations are mainly based on treatment received and are automatically suggested, thanks to built-in algorithms. These may be adapted and further individualised by the treating physician in case of special disease and survivor circumstances. The SurPass was tested at the Istituto Giannina Gaslini, Italy, and received positive feedback. It is now being integrated at the institutional, regional and national level. CONCLUSIONS: The SurPass is potentially an essential tool for improved and more harmonised follow-up of CCS. It also has the potential to be a useful tool for empowering CCSs to be responsible for their own well-being and preventing adverse events whenever possible. With sufficient commitment on the European level, this solution should increase the capacity to respond more effectively to the needs of European CCS.
BACKGROUND: Currently, there are between 300,000 and 500,000 childhood cancer survivors (CCSs) in Europe. A significant proportion is at high risk, and at least 60% of them develop adverse health-related outcomes that can appear several years after treatment completion. Many survivors are unaware of their personal risk, and there seems to be a general lack of information among healthcare providers about pathophysiology and natural history of treatment-related complications. This can generate incorrect or delayed diagnosis and treatments. METHOD: The Survivorship Passport (SurPass) consists of electronic documents, which summarise the clinical history of the childhood or adolescent cancer survivor. It was developed by paediatric oncologists of the PanCare and SIOPE networks and IT experts of Cineca, together with parents, patients, and survivors' organisations within the European Union-funded European Network for Cancer research in Children and Adolescents. It consists of a template of a web-based, simply written document, translatable in all European languages, to be given to each CCS. The SurPass provides a summary of each survivor's clinical history, with detailed information about the original cancer and of treatments received, together with personalised follow-up and screening recommendations based on guidelines published by the International Guidelines Harmonization Group and PanCareSurFup. RESULTS: The SurPass data schema contains a maximum of 168 variables and uses internationally approved nomenclature, except for radiotherapy fields, where a new classification was defined by radiotherapy experts. The survivor-specific screening recommendations are mainly based on treatment received and are automatically suggested, thanks to built-in algorithms. These may be adapted and further individualised by the treating physician in case of special disease and survivor circumstances. The SurPass was tested at the Istituto Giannina Gaslini, Italy, and received positive feedback. It is now being integrated at the institutional, regional and national level. CONCLUSIONS: The SurPass is potentially an essential tool for improved and more harmonised follow-up of CCS. It also has the potential to be a useful tool for empowering CCSs to be responsible for their own well-being and preventing adverse events whenever possible. With sufficient commitment on the European level, this solution should increase the capacity to respond more effectively to the needs of European CCS.
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