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; Feijen, Elizabeth A M Lieke; Fidler, Miranda M; Frey, Eva; Garwicz, Stanislaw; Grabow, Desiree; Gudmundsdottir, Thorgerdur; Hagberg, Oskar; Harila-Saari, Arja; Hau, Eva M; Haupt, Riccardo; Hawkins, Mike M; ... (2018). The PanCareSurFup consortium: research and guidelines to improve lives for survivors of childhood cancer. European journal of cancer, 103, pp. 238-248. Elsevier 10.1016/j.ejca.2018.08.017

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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.

Item Type:

Journal Article (Review Article)

Division/Institute:

04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine
04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine

UniBE Contributor:

Hau Grosch, Eva-Maria; Kühni, Claudia and Kuonen, Rahel

Subjects:

600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services

ISSN:

0959-8049

Publisher:

Elsevier

Language:

English

Submitter:

Tanya Karrer

Date Deposited:

24 Oct 2018 15:24

Last Modified:

27 Oct 2019 01:17

Publisher DOI:

10.1016/j.ejca.2018.08.017

PubMed ID:

30286417

Uncontrolled Keywords:

Cardiac late effects Childhood and adolescent cancer Guidelines Late mortality Second malignancies Survivors

BORIS DOI:

10.7892/boris.120537

URI:

https://boris.unibe.ch/id/eprint/120537

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