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

Byrne, Julianne; Alessi, Daniela; Allodji, Rodrigue S.; Bagnasco, Francesca; Bárdi, Edit; Bautz, Andrea; Bright, Chloe J.; Brown, Morven; Diallo, Ibrahima and Feijen, Elizabeth A.M.(Lieke), et al. (2018) In European Journal of Cancer 103. p.238-248
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... (More)

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.

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keywords
Cardiac late effects, Childhood and adolescent cancer, Guidelines, Late mortality, Second malignancies, Survivors
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European Journal of Cancer
volume
103
pages
11 pages
publisher
IFAC & Elsevier Ltd.
external identifiers
  • scopus:85054072945
ISSN
0959-8049
DOI
10.1016/j.ejca.2018.08.017
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English
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yes
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6d2ec677-acfe-4442-8db0-72b0eafdf21b
date added to LUP
2018-10-09 10:10:45
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2019-06-11 03:54:28
@article{6d2ec677-acfe-4442-8db0-72b0eafdf21b,
  abstract     = {<p>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.</p>},
  author       = {Byrne, Julianne and Alessi, Daniela and Allodji, Rodrigue S. and Bagnasco, Francesca and Bárdi, Edit and Bautz, Andrea and Bright, Chloe J. and Brown, Morven and Diallo, Ibrahima and Feijen, Elizabeth A.M.(Lieke) and Fidler, Miranda M. and Frey, Eva and Garwicz, Stanislaw and Grabow, Desiree and Gudmundsdottir, Thorgerdur and Hagberg, Oskar and Harila-Saari, Arja and Hau, Eva M. and Haupt, Riccardo and Hawkins, Mike M. and Jakab, Zsuzsanna and Jankovic, Momcilo and Kaatsch, Peter and Kaiser, Melanie and Kremer, Leontien C.M. and Kuehni, Claudia E. and Kuonen, Rahel and Ladenstein, Ruth and Lähteenmäki, Päivi Maria and Levitt, Gill and Linge, Helena and LLanas, Damien and Michel, Gisela and Morsellino, Vera and Mulder, Renee L. and Reulen, Raoul C. and Ronckers, Cécile M. and Sacerdote, Carlotta and Skinner, Roderick and Steliarova-Foucher, Eva and van der Pal, Helena J. and de Vathaire, Florent and Vũ Bezin, Giao and Wesenberg, Finn and Wiebe, Thomas and Winter, David L. and Falck Winther, Jeanette and Witthoff, Elise and Zadravec Zaletel, Lorna and Hjorth, Lars},
  issn         = {0959-8049},
  keyword      = {Cardiac late effects,Childhood and adolescent cancer,Guidelines,Late mortality,Second malignancies,Survivors},
  language     = {eng},
  pages        = {238--248},
  publisher    = {IFAC & Elsevier Ltd.},
  series       = {European Journal of Cancer},
  title        = {The PanCareSurFup consortium : research and guidelines to improve lives for survivors of childhood cancer},
  url          = {http://dx.doi.org/10.1016/j.ejca.2018.08.017},
  volume       = {103},
  year         = {2018},
}