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European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer

van Kalsbeek, Rebecca J. ; van der Pal, Helena J.H. ; Kremer, Leontien C.M. ; Bardi, Edit ; Brown, Morven C. ; Effeney, Rachel ; Winther, Jeanette F. ; Follin, Cecilia LU ; den Hartogh, Jaap and Haupt, Riccardo , et al. (2021) In European Journal of Cancer 154. p.316-328
Abstract

Background: Long-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines. Methods: The PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries,... (More)

Background: Long-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines. Methods: The PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated in the first Europe-wide effort to provide unified recommendations in anticipation of evidence-based guidelines. A pragmatic methodology was used to define recommendations for topics where no evidence-based IGHG recommendations exist. The objective was to describe the surveillance requirements for high-quality care while balancing the different infrastructures and resources across European health care systems. The process included two face-to-face meetings and an external consultation round involving 18 experts from 14 countries. Results: Twenty-five harmonised recommendations for LTFU care were developed collaboratively and address topics requiring awareness only (n = 6), awareness, history and/or physical examination (n = 9), or additional surveillance tests (n = 10). Conclusions: The PanCareFollowUp Recommendations, representing a unique agreement across European stakeholders, emphasise awareness among survivors and health care providers in addition to tailored clinical evaluation and/or surveillance tests. They include existing IGHG guidelines and additional recommendations developed by a pragmatic methodology and will be used in the Horizon 2020–funded PanCareFollowUp project to improve health and QoL of CAYA cancer survivors.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Aftercare, Cancer survivors, Neoplasms, Patient participation, Practice guideline, Quality of life, Survivorship
in
European Journal of Cancer
volume
154
pages
13 pages
publisher
Elsevier
external identifiers
  • pmid:34333209
  • scopus:85111473025
ISSN
0959-8049
DOI
10.1016/j.ejca.2021.06.004
language
English
LU publication?
yes
id
2123769b-9097-4706-837d-fe95347d19e7
date added to LUP
2021-08-24 13:10:17
date last changed
2024-04-20 10:02:57
@article{2123769b-9097-4706-837d-fe95347d19e7,
  abstract     = {{<p>Background: Long-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines. Methods: The PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated in the first Europe-wide effort to provide unified recommendations in anticipation of evidence-based guidelines. A pragmatic methodology was used to define recommendations for topics where no evidence-based IGHG recommendations exist. The objective was to describe the surveillance requirements for high-quality care while balancing the different infrastructures and resources across European health care systems. The process included two face-to-face meetings and an external consultation round involving 18 experts from 14 countries. Results: Twenty-five harmonised recommendations for LTFU care were developed collaboratively and address topics requiring awareness only (n = 6), awareness, history and/or physical examination (n = 9), or additional surveillance tests (n = 10). Conclusions: The PanCareFollowUp Recommendations, representing a unique agreement across European stakeholders, emphasise awareness among survivors and health care providers in addition to tailored clinical evaluation and/or surveillance tests. They include existing IGHG guidelines and additional recommendations developed by a pragmatic methodology and will be used in the Horizon 2020–funded PanCareFollowUp project to improve health and QoL of CAYA cancer survivors.</p>}},
  author       = {{van Kalsbeek, Rebecca J. and van der Pal, Helena J.H. and Kremer, Leontien C.M. and Bardi, Edit and Brown, Morven C. and Effeney, Rachel and Winther, Jeanette F. and Follin, Cecilia and den Hartogh, Jaap and Haupt, Riccardo and Hjorth, Lars and Kepak, Tomas and Kepakova, Katerina and Levitt, Gill and Loonen, Jacqueline J. and Mangelschots, Marlies and Muraca, Monica and Renard, Marleen and Sabic, Harun and Schneider, Carina U. and Uyttebroeck, Anne and Skinner, Roderick and Mulder, Renée L.}},
  issn         = {{0959-8049}},
  keywords     = {{Aftercare; Cancer survivors; Neoplasms; Patient participation; Practice guideline; Quality of life; Survivorship}},
  language     = {{eng}},
  pages        = {{316--328}},
  publisher    = {{Elsevier}},
  series       = {{European Journal of Cancer}},
  title        = {{European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer}},
  url          = {{http://dx.doi.org/10.1016/j.ejca.2021.06.004}},
  doi          = {{10.1016/j.ejca.2021.06.004}},
  volume       = {{154}},
  year         = {{2021}},
}