The ‘Survivorship Passport’ for childhood cancer survivors

Research output: Contribution to journalArticle

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.

Details

Authors
  • the PanCareSurFup, ENCCA Working Group
  • ExPo-r-Net Working Group
  • Riccardo Haupt
  • Samira Essiaf
  • Chiara Dellacasa
  • Cecile M. Ronckers
  • Silvia Caruso
  • Elaine Sugden
  • Lorna Zadravec Zaletel
  • Monica Muraca
  • Vera Morsellino
  • Anita Kienesberger
  • Anne Blondeel
  • Davide Saraceno
  • Maurizio Ortali
  • Leontien C.M. Kremer
  • Roderick Skinner
  • Jelena Roganovic
  • Francesca Bagnasco
  • Gill A. Levitt
  • Marisa De Rosa
  • Martin Schrappe
  • Lars Hjorth
  • Ruth Ladenstein
  • Stefania Menoni
  • Christophe Bergeron
  • Jaap den Hartogh
  • Sabine Karner
  • Brice Fresneau
  • Kathy Pritchard Jones
  • Gilles Vassal
  • Gerlind Bode
  • Eva Frey
  • Ulrike Hennewig
  • Maia Iris
  • Zsuzsanna Jakab
  • Helen Kosmidis
  • Izolda Kriviene
  • Catalina Marquez
  • Dalit Modan-Moses
  • Anna Panasiuk
  • Janine Vetsch
Organisations
External organisations
  • The European Society of Paediatric Oncology (SIOPE)
  • PanCare
  • Institute of Oncology, Ljubljana
  • Royal Victoria Infirmary
  • University Hospital Rijeka
  • University Medical Center Schleswig-Holstein Campus Kiel
  • Skåne University Hospital
  • Centre Léon Bérard
  • Dutch Childhood Cancer Parent Organisation (VOKK)
  • University of Paris-Saclay
  • Institut Gustave Roussy
  • Childhood Cancer International
  • St. Anna Children's Hospital
  • University Hospital Giessen and Marburg
  • Instituto Português de Oncologia do Porto Francisco Gentil (IPO)
  • Semmelweis University
  • Hospital MITERA
  • Siauliai Hospital
  • University Hospital Virgen del Rocío
  • Sheba Medical Center
  • Tel-Aviv University
  • Medical University of Bialystok
  • University of Lucerne
  • Gaslini Children's Hospital
  • Emma Children’s Hospital
  • Princess Maxima Center for Pediatric Oncology/Hematology
  • John Radcliffe Hospital
  • Austrian Childhood Cancer Organisation
  • Great Ormond Street Hospital for Children NHS Foundation Trust
  • University of Kiel
  • Inter-University Consortium Cineca
  • University College London
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Cancer and Oncology

Keywords

  • Cancer treatment summary, Childhood cancer, Late effects, Long-term care, Long-term follow-up, Paediatric cancer, Survivorship
Original languageEnglish
Pages (from-to)69-81
Number of pages13
JournalEuropean Journal of Cancer
Volume102
Publication statusPublished - 2018 Oct 1
Publication categoryResearch
Peer-reviewedYes