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

Research output: Contribution to journalArticle

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
  • Oskar Hagberg
  • Arja Harila-Saari
  • Eva M Hau
  • Riccardo Haupt
  • Zsuzsanna Jakab
  • Momcilo Jankovic
  • Peter Kaatsch
  • Melanie Kaiser
  • Leontien C M Kremer
  • Claudia E Kuehni
  • Rahel Kuonen
  • Ruth Ladenstein
  • Päivi Maria Lähteenmäki
  • Gill Levitt
  • Helena Linge
  • Damien LLanas
  • Gisela Michel
  • Vera Morsellino
  • Renee L Mulder
  • Cécile M Ronckers
  • Carlotta Sacerdote
  • Roderick Skinner
  • Eva Steliarova-Foucher
  • Helena J van der Pal
  • Florent de Vathaire
  • Giao Vũ Bezin
  • Finn Wesenberg
  • Thomas Wiebe
  • David L Winter
  • Jeanette Falck Winther
  • Elise Witthoff
  • Lorna Zadravec Zaletel
  • Lars Hjorth

Colleges, School and Institutes

External organisations

  • Boyne Research Institute, 5 Bolton Square, East, Drogheda, Co., Louth, A92 RY6K, Ireland. Electronic address: jbyrne@boyneresearch.ie.
  • Childhood Cancer Registry of Piedmont, Cancer Epidemiology Unit, Città Della Salute e Della Scienza Hospital-University of Turin and Center for Cancer Prevention (CPO), Via Santena 7, 10126, Torino, Italy.
  • Cancer and Radiation, Unit 1018 INSERM, University Paris-Saclay, Gustave Roussy, 39, rue Camille Desmoulins, 94805, Villejuif Cedex, France.
  • Epidemiology and Biostatistics Unit, Italian Off-Therapy Registry (OTR), Istituto Giannina Gaslini, Via Gerolamo Gaslini, 5, 16148, Genova, Italy.
  • 2nd Department of Pediatrics, Semmelweis University, Budapest, Hungary; Kepler Universitätsklinikum, Linz, Austria.
  • Danish Cancer Society Research Center, Strandboulevarden 49, 2100, Copenhagen, Denmark.
  • Centre for Childhood Cancer Survivor Studies, Institute of Applied Health Research, University of Birmingham, Birmingham, B15 2TT, United Kingdom.
  • Newcastle University
  • Department of Pediatric Oncology, Emma Children's Hospital/Academic Medical Center Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, the Netherlands; Princess Máxima Centre for Paediatric Oncology, Utrecht, the Netherlands.
  • Section of Cancer Surveillance, International Agency for Research on Cancer, World Health Organisation, CEDEX 08, Lyon, 69372, France.
  • St.Anna Children's Hospital, Kinderspitalgasse 6, A-1090 Vienna, Austria.
  • Lund University, Skåne University Hospital, Department of Clinical Sciences, Pediatrics, Lund, Sweden.
  • German Childhood Cancer Registry (GCCR), Institute for Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Center, Johannes Gutenberg University Mainz, Mainz, Germany. desiree.grabow@unimedizin-mainz.de.
  • Regional Cancer Centre South, Lund, Sweden.
  • Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
  • Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Switzerland; Department of Paediatrics, University Children's Hospital of Bern, University of Bern, Switzerland.
  • Hungarian Childhood Cancer Registry, 2nd Department of Pediatrics, Semmelweis University, Budapest, Hungary.
  • Pediatric Clinic, University of Milano-Bicocca, Foundation MBBM and Italian Off-Therapy Register (OTR), Monza, Italy.
  • Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
  • St. Anna Children's Cancer Research Institute, Medical University, Department of Paediatrics, Vienna, Austria.
  • Department of Pediatric and Adolescent Medicine, Turku University and Turku University Hospital, Turku, Finland.
  • Department of Oncology, Great Ormond Street Hospital for Children NHS Foundation Trust, London WCIN3JH, UK.
  • Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
  • Department of Paediatric and Adolescent Haematology and Oncology, Children's BMT Unit, Great North Children's Hospital, Royal Victoria Infirmary, Newcastle Upon Tyne, NE1 4LP, UK; Northern Institute of Cancer Research, Newcastle University, Newcastle Upon Tyne, NE4 5PL, UK.
  • Princess Máxima Centre for Paediatric Oncology, Utrecht, the Netherlands.
  • Norwegian Cancer Register and Dept. of Pediatric Medicine, Oslo University Hospital and Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Norway.
  • Danish Cancer Society Research Center, Strandboulevarden 49, 2100, Copenhagen, Denmark; Department of Clinical Medicine, Faculty of Health, Aarhus University, Palle Juul-Jensens Boulevard 82, 8200, Aarhus, Denmark.
  • Division of Radiotherapy, Institute of Oncology, Zaloška cesta 2, 1000, Ljubljana, Slovenia.

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

Original languageEnglish
Pages (from-to)238-248
Number of pages11
JournalEuropean Journal of Cancer
Volume103
Early online date1 Oct 2018
Publication statusPublished - Nov 2018