title: Survivorship after childhood cancer: PanCare: a European Network to promote optimal long-term care.
abstract: Survival after childhood cancer has improved substantially over recent decades. Although cancer in childhood is rare increasingly effective treatments have led to a growing number of long-term survivors. It is estimated that there are between 300,000 and 500,000 childhood cancer survivors in Europe. Such good survival prospects raise important questions relating to late effects of treatment for cancer. Research has shown that the majority will suffer adverse health outcomes and premature mortality compared with the general population. While chronic health conditions are common among childhood cancer survivors, each specific type of late effect is very rare. Long-term effects must be considered particularly when addressing complex multimodality treatments, and taking into account the interaction between aspects of treatment and genotype. The PanCare Network was set up across Europe in order to effectively answer many of these questions and thereby improve the care and quality of life of survivors. The need for a structured long-term follow-up system after childhood cancer has been recognised for some time and strategies for implementation have been developed, first nationally and then trans-nationally, across Europe. Since its first meeting in Lund in 2008, the goal of the PanCare Network has been to coordinate and implement these strategies to ensure that every European survivor of childhood and adolescent cancer receives optimal long-term care. This paper will outline the structure and work of the PanCare Network, including the results of several European surveys, the start of two EU-funded projects and interactions with relevant stakeholders and related projects.
authors.affiliation: Skåne University Hospital, Lund University, Lund, Sweden. Electronic address: Lars.Hjorth@med.lu.se.
authors.forename: Lars
authors.initials: L
authors.lastname: Hjorth
authors.affiliation: Istituto Giannina Gaslini, Genova, Italy.
authors.forename: Riccardo
authors.initials: R
authors.lastname: Haupt
authors.affiliation: Great North Children's Hospital, Newcastle University, Newcastle, UK.
authors.forename: Roderick
authors.initials: R
authors.lastname: Skinner
authors.affiliation: German Childhood Cancer Registry, University Medical Centre Mainz, Germany.
authors.forename: Desiree
authors.initials: D
authors.lastname: Grabow
authors.affiliation: Boyne Research Institute, Drogheda, Ireland.
authors.forename: Julianne
authors.initials: J
authors.lastname: Byrne
authors.affiliation: Austrian Childhood Cancer Organisation, Vienna, Austria.
authors.forename: Sabine
authors.initials: S
authors.lastname: Karner
authors.affiliation: Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Gill
authors.initials: G
authors.lastname: Levitt
authors.affiliation: University of Lucerne, Lucerne, Switzerland.
authors.forename: Gisela
authors.initials: G
authors.lastname: Michel
authors.affiliation: Academic Medical Centre, Amsterdam, Netherlands.
authors.forename: Helena
authors.initials: H
authors.lastname: van der Pal
authors.affiliation: 2nd Department of Pediatrics, Semmelweis University, Budapest, Hungary.
authors.forename: Edit
authors.initials: E
authors.lastname: Bárdi
authors.affiliation: Kinder und Jugendklinik, Universität Erlangen, CCC ErMN, Erlangen, Germany.
authors.forename: Jörn D
authors.initials: JD
authors.lastname: Beck
authors.affiliation: Institut Gustave Roussy, Paris, France.
authors.forename: Florent
authors.initials: F
authors.lastname: de Vathaire
authors.affiliation: Institute of Primary and Community Care, Lucerne, Switzerland.
authors.forename: Stefan
authors.initials: S
authors.lastname: Essig
authors.affiliation: St. Anna Children's Hospital, Vienna, Austria.
authors.forename: Eva
authors.initials: E
authors.lastname: Frey
authors.affiliation: Skåne University Hospital, Lund University, Lund, Sweden.
authors.forename: Stanislaw
authors.initials: S
authors.lastname: Garwicz
authors.affiliation: University of Birmingham, Birmingham, UK.
authors.forename: Mike
authors.initials: M
authors.lastname: Hawkins
authors.affiliation: 2nd Department of Pediatrics, Semmelweis University, Budapest, Hungary.
authors.forename: Zsuzsanna
authors.initials: Z
authors.lastname: Jakab
authors.affiliation: Fondazione MBBM, Monza, Italy.
authors.forename: Momcilo
authors.initials: M
authors.lastname: Jankovic
authors.affiliation: Wroclaw University, Wroclaw, Poland.
authors.forename: Bernarda
authors.initials: B
authors.lastname: Kazanowska
authors.affiliation: University Hospital Brno, Brno, Czech Republic.
authors.forename: Tomas
authors.initials: T
authors.lastname: Kepak
authors.affiliation: Academic Medical Centre, Amsterdam, Netherlands.
authors.forename: Leontien
authors.initials: L
authors.lastname: Kremer
authors.affiliation: Medical University of Graz, Graz, Austria.
authors.forename: Herwig
authors.initials: H
authors.lastname: Lackner
authors.affiliation: St Hilda's College, Oxford, UK.
authors.forename: Elaine
authors.initials: E
authors.lastname: Sugden
authors.affiliation: Fondazione IRCCS Istituto Nazionale dei Tumori Milano, Italy.
authors.forename: Monica
authors.initials: M
authors.lastname: Terenziani
authors.affiliation: Institute of Oncology, Ljubljana, Slovenia.
authors.forename: Lorna Zadravec
authors.initials: LZ
authors.lastname: Zaletel
authors.affiliation: German Childhood Cancer Registry, University Medical Centre Mainz, Germany.
authors.forename: Peter
authors.initials: P
authors.lastname: Kaatsch
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005060:Europe / Q000453:epidemiology; D005260:Female; D006801:Humans; D008134:Long-Term Care; D008297:Male; D009369:Neoplasms / Q000401:mortality* / Q000534:rehabilitation*; D011788:Quality of Life; D017741:Survivors / Q000706:statistics & numerical data*; D016896:Treatment Outcome
keywords: Childhood cancer; Late effects; Long-term care; Long-term follow-up; Survivorship