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The PanCareSurFup consortium: research and guidelines to improve lives for survivors of childhood cancer
Boyne Res Inst, 5 Bolton Sq East, Drogheda A92 RY6K, Louth, Ireland..
Univ Turin, Citta Salute & Sci Hosp, Canc Epidemiol Unit, Childhood Canc Registry Piedmont, Via Santena 7, I-10126 Turin, Italy.;Ctr Canc Prevent CPO, Via Santena 7, I-10126 Turin, Italy..
Univ Paris Saclay, Gustave Roussy, Canc & Radiat, Unit INSERM 1018, 39 Rue Camille Desmoulins, F-94805 Villejuif, France..
Ist Giannina Gaslini, Epidemiol & Biostat Unit, Italian Off Therapy Registry OTR, Via Gerolamo Gaslini 5, I-16148 Genoa, Italy..
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2018 (English)In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 103, no Nov, p. 238-248Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
ELSEVIER SCI LTD , 2018. Vol. 103, no Nov, p. 238-248
Keywords [en]
Childhood and adolescent cancer, Survivors, Cardiac late effects, Second malignancies, Late mortality, Guidelines
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
URN: urn:nbn:se:uu:diva-364549DOI: 10.1016/j.ejca.2018.08.017ISI: 000447292100028PubMedID: 30286417OAI: oai:DiVA.org:uu-364549DiVA, id: diva2:1259588
Funder
EU, FP7, Seventh Framework Programme, 257505Available from: 2018-10-30 Created: 2018-10-30 Last updated: 2019-02-20Bibliographically approved

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Harila-Saari, Arja H.

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