TY - JOUR
T1 - From long-term follow-up Recommendations for clinical practice to plain language summaries for childhood, adolescent, and young adult cancer survivors
AU - van den Oever, Selina R.
AU - Fuchs, Tessa
AU - Levitt, Gill A.
AU - Haupt, Riccardo
AU - Mulder, Renée L.
AU - Amariutei, Ana
AU - Bardi, Edit
AU - Becker, Tom
AU - Brown, Morven
AU - Gsell, Hannah
AU - Hartogh, Jaap den
AU - Essiaf, Samira
AU - Muraca, Monica
AU - Potter, Emma
AU - Schneider, Carina
AU - Sugden, Elaine
AU - Tomášiková, Zuzana
AU - Vermeulen, Herma
AU - Kremer, Leontien C.M.
AU - Skinner, Roderick
AU - van der Pal, Helena J.H.
N1 - Publisher Copyright:
© 2024 The Authors
PY - 2024/6
Y1 - 2024/6
N2 - Background: 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.
AB - Background: 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.
KW - long-term follow-up care
KW - paediatric oncology
KW - Patient information
KW - survivorship
UR - http://www.scopus.com/inward/record.url?scp=85193791082&partnerID=8YFLogxK
U2 - 10.1016/j.ejcped.2024.100165
DO - 10.1016/j.ejcped.2024.100165
M3 - Article
AN - SCOPUS:85193791082
SN - 2772-610X
VL - 3
JO - EJC Paediatric Oncology
JF - EJC Paediatric Oncology
M1 - 100165
ER -