The PanCareSurFup consortium: research and guidelines to improve lives for survivors of childhood cancer

Research output: Contribution to journalArticle

Abstract

Background: Second malignant neoplasms and cardiotoxicity are among the most serious and frequent adverse health outcomes experienced by childhood and adolescent cancer survivors (CCSs) and contribute significantly to their increased risk of premature mortality. Owing to differences in health-care systems, language and culture across the continent, Europe has had limited success in establishing multi-country collaborations needed to assemble the numbers of survivors required to clarify the health issues arising after successful cancer treatment. PanCareSurFup (PCSF) is the first pan-European project to evaluate some of the serious long-term health risks faced by survivors. This article sets out the overall rationale, methods and preliminary results of PCSF. Methods: The PCSF consortium pooled data from 13 cancer registries and hospitals in 12 European countries to evaluate subsequent primary malignancies, cardiac disease and late mortality in survivors diagnosed between ages 0 and 20 years. In addition, PCSF integrated radiation dosimetry to sites of second malignancies and to the heart, developed evidence-based guidelines for long-term care and for transition services, and disseminated results to survivors and the public. Results: We identified 115,596 individuals diagnosed with cancer, of whom 83,333 were 5-year survivors and diagnosed from 1940 to 2011. This single data set forms the basis for cohort analyses of subsequent malignancies, cardiac disease and late mortality and case–control studies of subsequent malignancies and cardiac disease in 5-year survivors. Conclusions: PCSF delivered specific estimates of risk and comprehensive guidelines to help survivors and care-givers. The expected benefit is to provide every European CCS with improved access to care and better long-term health.

Details

Authors
  • Julianne Byrne
  • Daniela Alessi
  • Rodrigue S. Allodji
  • Francesca Bagnasco
  • Edit Bárdi
  • Andrea Bautz
  • Chloe J. Bright
  • Morven Brown
  • Ibrahima Diallo
  • Elizabeth A.M.(Lieke) Feijen
  • Miranda M. Fidler
  • Eva Frey
  • Stanislaw Garwicz
  • Desiree Grabow
  • Thorgerdur Gudmundsdottir
  • Arja Harila-Saari
  • Eva M. Hau
  • Riccardo Haupt
  • Mike M. Hawkins
  • Zsuzsanna Jakab
  • Momcilo Jankovic
  • Peter Kaatsch
  • Melanie Kaiser
  • Leontien C.M. Kremer
  • Claudia E. Kuehni
  • Rahel Kuonen
  • Ruth Ladenstein
  • Päivi Maria Lähteenmäki
  • Gill Levitt
  • Damien LLanas
  • Gisela Michel
  • Vera Morsellino
  • Renee L. Mulder
  • Raoul C. Reulen
  • Cécile M. Ronckers
  • Carlotta Sacerdote
  • Roderick Skinner
  • Eva Steliarova-Foucher
  • Helena J. van der Pal
  • Florent de Vathaire
  • Giao Vũ Bezin
  • Finn Wesenberg
  • David L. Winter
  • Jeanette Falck Winther
  • Lorna Zadravec Zaletel
Organisations
External organisations
  • Boyne Research Institute
  • University of Paris-Saclay
  • Gaslini Children's Hospital
  • Semmelweis University
  • Danish Cancer Society Research Center
  • University of Birmingham
  • University of Newcastle upon Tyne
  • Academic Medical Center
  • International Agency for Research on Cancer, World Health Organization
  • St. Anna Children's Hospital
  • Universitätsmedizin Mainz
  • Regional Cancer Centre South
  • Uppsala University
  • University of Bern
  • Medical University of Vienna
  • Turku University Hospital
  • Skåne University Hospital
  • University of Lucerne
  • Royal Victoria Infirmary
  • Oslo university hospital
  • Aarhus University
  • Institute of Oncology, Ljubljana
  • Citta' della Salute e della Scienza Hospital-University of Turin
  • University of Turin
  • Kepler Universitätsklinikum
  • Princess Maxima Center for Pediatric Oncology/Hematology
  • University of Milano-Bicocca
  • University of Turku
  • Great Ormond Street Hospital for Children NHS Foundation Trust
  • University of Oslo
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Cancer and Oncology

Keywords

  • Cardiac late effects, Childhood and adolescent cancer, Guidelines, Late mortality, Second malignancies, Survivors
Original languageEnglish
Pages (from-to)238-248
Number of pages11
JournalEuropean Journal of Cancer
Volume103
Publication statusPublished - 2018
Publication categoryResearch
Peer-reviewedYes