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Long-term survivors of childhood cancer: cure and care—the Erice Statement (2006) revised after 10 years (2016)

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Abstract

Purpose: The number of persons who have successfully completed treatment for a cancer diagnosed during childhood and who have entered adulthood is increasing over time, and former patients will become aging citizens. Methods: Ten years ago, an expert panel met in Erice, Italy, to produce a set of principles concerning the cure and care of survivors of childhood and adolescent cancer. The result was the Erice Statement (Haupt et al. Eur J Cancer 43(12):1778-80, 2007) that was translated into nine languages. Ten years on, it was timely to review, and possibly revise, the Erice Statement in view of the changes in paediatric oncology and the number and results of international follow-up studies conducted during the intervening years. Results: The long-term goal of the cure and care of a child with cancer is that he/she becomes a resilient and autonomous adult with optimal health-related quality of life, accepted in society at the same level as his/her age peers. "Cure" refers to cure from the original cancer, regardless of any potential for, or presence of, remaining disabilities or side effects of treatment. The care of a child with cancer should include complete and honest information for parents and the child. Conclusions and implication for cancer survivors: Some members of the previous expert panel, as well as new invited experts, met again in Erice to review the Erice Statement, producing a revised version including update and integration of each of the ten points. In addition, a declaration has been prepared, by the Childhood Cancer International Survivors Network in Dublin on October 2016 (see Annex 1).
Long-term survivors of childhood cancer: cure and carethe Erice
Statement (2006) revised after 10 years (2016)
Momcilo Jankovic
1
&Riccardo Haupt
2
&John J. Spinetta
3
&Joern D. Beck
4,5
&Julianne Byrne
6
&Gabriele Calaminus
7
&
Herwig Lackner
8
&Andrea Biondi
1
&Kevin Oeffinger
9
&Melissa Hudson
10
&Roderick Skinner
11
&Gregory Reaman
12
&
Helena van der Pal
13
&Leontien Kremer
13,14
&Jaap den Hartogh
15
&Gisela Michel
16
&Eva Frey
17
&Edit Bardi
18,19
&
Michael Hawkins
20
&Katie Rizvi
21
&Monica Terenziani
22
&Maria Grazia Valsecchi
23
&Gerlind Bode
24
&Meriel Jenney
25
&
Florent de Vathaire
26
&Stanislaw Garwicz
27
&Gill A. Levitt
28
&Desiree Grabow
29
&Claudia E. Kuehni
30
&
Martin Schrappe
31
&Lars Hjorth
27
&participants in PanCare
Received: 20 March 2018 /Accepted: 23 May 2018 /Published online: 26 June 2018
#Springer Science+Business Media, LLC, part of Springer Nature 2018
Abstract
Purpose The number of persons who have successfully completed treatment for a cancer diagnosed during childhood and who
have entered adulthood is increasing over time, and former patients will become aging citizens.
Methods Ten years ago, an expert panel met in Erice, Italy, to produce a set of principles concerning the cure and care of
survivors of childhood and adolescent cancer. The result was the Erice Statement (Haupt et al. Eur J Cancer 43(12):177880,
2007) that was translated into nine languages. Ten years on, it was timely to review, and possibly revise, the Erice Statement in
view of the changes in paediatric oncology and the number and results of international follow-up studies conducted during the
intervening years.
Results The long-term goal of the cure and care of a child with cancer is that he/she becomes a resilient and autonomous adult
with optimal health-related quality of life, accepted in society at the same level as his/her age peers. Curerefers to cure from the
original cancer, regardless of any potential for, or presence of, remaining disabilities or side effects of treatment. The care of a
child with cancer should include complete and honest information for parents and the child.
Conclusions and implication for cancer survivors Some members of the previous expert panel, as well as new invited experts, met
again in Erice to review the Erice Statement, producing a revised version including update and integration of each of the ten
points. In addition, a declaration has been prepared, by the Childhood Cancer International Survivors Network in Dublin on
October 2016 (see Annex 1).
Keywords Childhood cure .Childhood care .Health .Quality of life
Introduction
The number of persons who have successfully completed
treatment for a cancer diagnosed during childhood and who
have entered adulthood is increasing over time, and former
patients will become aging citizens.
Ten years ago, an expert panel met in Erice, Italy, to pro-
duce a set of principles concerning the cure and care of survi-
vors of childhood and adolescent cancer. The result was the
Erice Statement [1]. The Erice Statement was translated into
nine languages and can be found in the PanCare website
(https://www.pancare.eu/en/erice/). PanCare is a
multidisciplinary pan-European network of professionals, sur-
vivors and their families that aims to reduce the frequency,
severity and impact of late side effects of the treatment of
children and adolescents with cancer.
Ten years on, it was timely to review, and possibly revise,
the Erice Statement in view of the changes in paediatric on-
cology and the number and results of international follow-up
studies conducted during the intervening years. Some
Electronic supplementary material The online version of this article
(https://doi.org/10.1007/s11764-018-0701-0) contains supplementary
material, which is available to authorized users.
*Momcilo Jankovic
m.jankovic@asst-monza.it
Extended author information available on the last page of the article
Journal of Cancer Survivorship (2018) 12:647650
https://doi.org/10.1007/s11764-018-0701-0
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... www.nature.com/scientificreports/ sequlae potentially predisposing to early death [11][12][13][14] . Mortality of survivors is higher in all age groups compared to the background population in large cohort studies 9,10,[12][13][14] . ...
... We consider it a must to provide all survivors with detailed information on their primary disease and its treatment including potential risks of late side effects and the need for long-term follow-up. Transition and optimal care of survivors has to be tailored to risks determined by the primary disease, specific therapy administered and all potential organ damage [9][10][11][23][24][25][26][27][28]31,32 . Survivors can be divided into risk groups and suggestions can be made on their optimal individual care according to available guidelines 31 . ...
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... Lifelong long-term follow-up (LTFU) care is therefore considered essential to ameliorate long-term morbidity. The revised 2016 Erice statement [3] declared that CCSs have the right to late-effects information and appropriate LTFU care through a multidisciplinary clinic. A formal LTFU programme facilitates monitoring of late effects and early intervention, which should potentially reduce morbidity. ...
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