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The PanCareFollowUp Care Intervention : A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer

van Kalsbeek, Rebecca J. ; Mulder, Renée L. ; Haupt, Riccardo ; Muraca, Monica ; Hjorth, Lars LU ; Follin, Cecilia LU ; Kepak, Tomas ; Kepakova, Katerina ; Uyttebroeck, Anne and Mangelschots, Marlies , et al. (2022) In European Journal of Cancer 162. p.34-44
Abstract

Background: Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union–funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. Patients and methods: The... (More)

Background: Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union–funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. Patients and methods: The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan. Results: We developed the key components of the PanCareFollowUp Care Intervention: a PanCareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project. Conclusions: The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors’ health and well-being.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Cancer survivorship care, Childhood cancer survivor, Long-term follow-up care, Person-centred care, Quality of life, Shared decision-making
in
European Journal of Cancer
volume
162
pages
11 pages
publisher
Elsevier
external identifiers
  • pmid:34953441
  • scopus:85121714471
ISSN
0959-8049
DOI
10.1016/j.ejca.2021.10.035
language
English
LU publication?
yes
additional info
Publisher Copyright: © 2021 The Authors
id
bd180f1a-c6a0-4b41-8b1c-ce365350b0bf
date added to LUP
2022-02-24 15:03:10
date last changed
2024-06-02 21:39:31
@article{bd180f1a-c6a0-4b41-8b1c-ce365350b0bf,
  abstract     = {{<p>Background: Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union–funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. Patients and methods: The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan. Results: We developed the key components of the PanCareFollowUp Care Intervention: a PanCareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project. Conclusions: The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors’ health and well-being.</p>}},
  author       = {{van Kalsbeek, Rebecca J. and Mulder, Renée L. and Haupt, Riccardo and Muraca, Monica and Hjorth, Lars and Follin, Cecilia and Kepak, Tomas and Kepakova, Katerina and Uyttebroeck, Anne and Mangelschots, Marlies and Falck Winther, Jeanette and Loonen, Jacqueline J. and Michel, Gisela and Bardi, Edit and Elmerdahl Frederiksen, Line and den Hartogh, Jaap and Mader, Luzius and Roser, Katharina and Schneider, Carina and Brown, Morven C. and Brunhofer, Melanie and Göttgens, Irene and Hermens, Rosella P.M.G. and Kienesberger, Anita and Korevaar, Joke C. and Skinner, Roderick and van der Pal, Helena J.H. and Kremer, Leontine C.M.}},
  issn         = {{0959-8049}},
  keywords     = {{Cancer survivorship care; Childhood cancer survivor; Long-term follow-up care; Person-centred care; Quality of life; Shared decision-making}},
  language     = {{eng}},
  pages        = {{34--44}},
  publisher    = {{Elsevier}},
  series       = {{European Journal of Cancer}},
  title        = {{The PanCareFollowUp Care Intervention : A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer}},
  url          = {{http://dx.doi.org/10.1016/j.ejca.2021.10.035}},
  doi          = {{10.1016/j.ejca.2021.10.035}},
  volume       = {{162}},
  year         = {{2022}},
}