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Lookup NU author(s): Dr Morven Brown, Professor Roderick Skinner
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND).
© 2024 The AuthorsBackground: Having sufficient knowledge of cancer diagnosis, treatment and late effects in survivors of childhood, adolescent, and young adult (CAYA) cancer is important for effective self-management and optimising health outcomes. Therefore, in collaboration with different stakeholders, the PanCare PLAIN Information Group converted the PanCareFollowUp Recommendations for late effects surveillance into information summaries that are Person-centred, written in Lay language, Accessible, Internationally relevant, and Navigable (PLAIN). Methods: The PanCare PLAIN Information Group, comprising 21 stakeholders from seven European countries, collaborated to provide concise information for survivors and their families. The aim was to deliver PLAIN summaries that are clear and accessible for the majority of survivors, while providing links to additional sources of information. The PLAIN summaries were drafted by the PanCare PLAIN Information Group and subjected to two internal and one external consultation round, the latter involving experts, CAYA cancer survivors and parents/caregivers. Results: In total, 45 PLAIN summaries were developed, each corresponding to one of the PanCareFollowUp Recommendations for late effects surveillance. The summaries provide information about late effects, personal health risks, important symptoms and signs, recommended surveillance strategies, possible referral and treatment options, and self-care. Conclusions: The PLAIN summaries are meant to increase knowledge in survivors and their families, while they may also inform healthcare professionals. Along with their translations, the PLAIN summaries will be made freely available on the PanCare website, with a link provided on the European Network of Youth Cancer Survivors information platform. In addition, they will become and integral part of the Survivorship Passport.
Author(s): van den Oever SR, Fuchs T, Levitt GA, Haupt R, Mulder RL, Amariutei A, Bardi E, Becker T, Brown M, Gsell H, Hartogh JD, Essiaf S, Muraca M, Potter E, Schneider C, Sugden E, Tomasikova Z, Vermeulen H, Kremer LCM, Skinner R, van der Pal HJH, PanCareFollowUp consortium
Publication type: Article
Publication status: Published
Journal: EJC Paediatric Oncology
Year: 2024
Volume: 3
Print publication date: 01/06/2024
Online publication date: 15/05/2024
Acceptance date: 02/04/2024
Date deposited: 04/06/2024
ISSN (electronic): 2772-610X
Publisher: Elsevier B.V.
URL: https://doi.org/10.1016/j.ejcped.2024.100165
DOI: 10.1016/j.ejcped.2024.100165
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