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The ‘Survivorship Passport’ for childhood cancer survivors

Haupt, Riccardo ; Essiaf, Samira ; Dellacasa, Chiara ; Ronckers, Cecile M. ; Caruso, Silvia ; Sugden, Elaine ; Zadravec Zaletel, Lorna ; Muraca, Monica ; Morsellino, Vera and Kienesberger, Anita , et al. (2018) In European Journal of Cancer 102. p.69-81
Abstract

Background: Currently, there are between 300,000 and 500,000 childhood cancer survivors (CCSs) in Europe. A significant proportion is at high risk, and at least 60% of them develop adverse health-related outcomes that can appear several years after treatment completion. Many survivors are unaware of their personal risk, and there seems to be a general lack of information among healthcare providers about pathophysiology and natural history of treatment-related complications. This can generate incorrect or delayed diagnosis and treatments. Method: The Survivorship Passport (SurPass) consists of electronic documents, which summarise the clinical history of the childhood or adolescent cancer survivor. It was developed by paediatric... (More)

Background: Currently, there are between 300,000 and 500,000 childhood cancer survivors (CCSs) in Europe. A significant proportion is at high risk, and at least 60% of them develop adverse health-related outcomes that can appear several years after treatment completion. Many survivors are unaware of their personal risk, and there seems to be a general lack of information among healthcare providers about pathophysiology and natural history of treatment-related complications. This can generate incorrect or delayed diagnosis and treatments. Method: The Survivorship Passport (SurPass) consists of electronic documents, which summarise the clinical history of the childhood or adolescent cancer survivor. It was developed by paediatric oncologists of the PanCare and SIOPE networks and IT experts of Cineca, together with parents, patients, and survivors’ organisations within the European Union–funded European Network for Cancer research in Children and Adolescents. It consists of a template of a web-based, simply written document, translatable in all European languages, to be given to each CCS. The SurPass provides a summary of each survivor's clinical history, with detailed information about the original cancer and of treatments received, together with personalised follow-up and screening recommendations based on guidelines published by the International Guidelines Harmonization Group and PanCareSurFup. Results: The SurPass data schema contains a maximum of 168 variables and uses internationally approved nomenclature, except for radiotherapy fields, where a new classification was defined by radiotherapy experts. The survivor-specific screening recommendations are mainly based on treatment received and are automatically suggested, thanks to built-in algorithms. These may be adapted and further individualised by the treating physician in case of special disease and survivor circumstances. The SurPass was tested at the Istituto Giannina Gaslini, Italy, and received positive feedback. It is now being integrated at the institutional, regional and national level. Conclusions: The SurPass is potentially an essential tool for improved and more harmonised follow-up of CCS. It also has the potential to be a useful tool for empowering CCSs to be responsible for their own well-being and preventing adverse events whenever possible. With sufficient commitment on the European level, this solution should increase the capacity to respond more effectively to the needs of European CCS.

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type
Contribution to journal
publication status
published
subject
keywords
Cancer treatment summary, Childhood cancer, Late effects, Long-term care, Long-term follow-up, Paediatric cancer, Survivorship
in
European Journal of Cancer
volume
102
pages
13 pages
publisher
Elsevier
external identifiers
  • pmid:30138773
  • scopus:85051638692
ISSN
0959-8049
DOI
10.1016/j.ejca.2018.07.006
language
English
LU publication?
yes
id
fe9aceba-a4cd-407c-8ad2-684df2979bcd
date added to LUP
2018-09-06 13:41:29
date last changed
2021-10-06 04:30:27
@article{fe9aceba-a4cd-407c-8ad2-684df2979bcd,
  abstract     = {<p>Background: Currently, there are between 300,000 and 500,000 childhood cancer survivors (CCSs) in Europe. A significant proportion is at high risk, and at least 60% of them develop adverse health-related outcomes that can appear several years after treatment completion. Many survivors are unaware of their personal risk, and there seems to be a general lack of information among healthcare providers about pathophysiology and natural history of treatment-related complications. This can generate incorrect or delayed diagnosis and treatments. Method: The Survivorship Passport (SurPass) consists of electronic documents, which summarise the clinical history of the childhood or adolescent cancer survivor. It was developed by paediatric oncologists of the PanCare and SIOPE networks and IT experts of Cineca, together with parents, patients, and survivors’ organisations within the European Union–funded European Network for Cancer research in Children and Adolescents. It consists of a template of a web-based, simply written document, translatable in all European languages, to be given to each CCS. The SurPass provides a summary of each survivor's clinical history, with detailed information about the original cancer and of treatments received, together with personalised follow-up and screening recommendations based on guidelines published by the International Guidelines Harmonization Group and PanCareSurFup. Results: The SurPass data schema contains a maximum of 168 variables and uses internationally approved nomenclature, except for radiotherapy fields, where a new classification was defined by radiotherapy experts. The survivor-specific screening recommendations are mainly based on treatment received and are automatically suggested, thanks to built-in algorithms. These may be adapted and further individualised by the treating physician in case of special disease and survivor circumstances. The SurPass was tested at the Istituto Giannina Gaslini, Italy, and received positive feedback. It is now being integrated at the institutional, regional and national level. Conclusions: The SurPass is potentially an essential tool for improved and more harmonised follow-up of CCS. It also has the potential to be a useful tool for empowering CCSs to be responsible for their own well-being and preventing adverse events whenever possible. With sufficient commitment on the European level, this solution should increase the capacity to respond more effectively to the needs of European CCS.</p>},
  author       = {Haupt, Riccardo and Essiaf, Samira and Dellacasa, Chiara and Ronckers, Cecile M. and Caruso, Silvia and Sugden, Elaine and Zadravec Zaletel, Lorna and Muraca, Monica and Morsellino, Vera and Kienesberger, Anita and Blondeel, Anne and Saraceno, Davide and Ortali, Maurizio and Kremer, Leontien C.M. and Skinner, Roderick and Roganovic, Jelena and Bagnasco, Francesca and Levitt, Gill A. and De Rosa, Marisa and Schrappe, Martin and Hjorth, Lars and Ladenstein, Ruth and Menoni, Stefania and Bergeron, Christophe and den Hartogh, Jaap and Karner, Sabine and Fresneau, Brice and Jones, Kathy Pritchard and Vassal, Gilles and Bode, Gerlind and Frey, Eva and Hennewig, Ulrike and Iris, Maia and Jakab, Zsuzsanna and Kosmidis, Helen and Kriviene, Izolda and Marquez, Catalina and Modan-Moses, Dalit and Panasiuk, Anna and Vetsch, Janine},
  issn         = {0959-8049},
  language     = {eng},
  month        = {10},
  pages        = {69--81},
  publisher    = {Elsevier},
  series       = {European Journal of Cancer},
  title        = {The ‘Survivorship Passport’ for childhood cancer survivors},
  url          = {http://dx.doi.org/10.1016/j.ejca.2018.07.006},
  doi          = {10.1016/j.ejca.2018.07.006},
  volume       = {102},
  year         = {2018},
}