TY - JOUR
T1 - The PanCareFollowUp Care Intervention
T2 - A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer
AU - van Kalsbeek, Rebecca J.
AU - Mulder, Renée L.
AU - Haupt, Riccardo
AU - Muraca, Monica
AU - Hjorth, Lars
AU - Follin, Cecilia
AU - Kepak, Tomas
AU - Kepakova, Katerina
AU - Uyttebroeck, Anne
AU - Mangelschots, Marlies
AU - Falck Winther, Jeanette
AU - Loonen, Jacqueline J.
AU - Michel, Gisela
AU - Bardi, Edit
AU - Elmerdahl Frederiksen, Line
AU - den Hartogh, Jaap
AU - Mader, Luzius
AU - Roser, Katharina
AU - Schneider, Carina
AU - Brown, Morven C.
AU - Brunhofer, Melanie
AU - Göttgens, Irene
AU - Hermens, Rosella P. M. G.
AU - Kienesberger, Anita
AU - Korevaar, Joke C.
AU - Skinner, Roderick
AU - van der Pal, Helena J. H.
AU - Kremer, Leontine C. M.
N1 - Funding Information: This work was supported by the European Union's Horizon 2020 research and innovation programme (grant number 824982 ); the Swedish Childhood Cancer Fund (grant number EU 2018–0002 ); and the Italian Ministry of Health (Ricerca Corrente, no grant number applicable). Publisher Copyright: © 2021 The Authors
PY - 2022/2/1
Y1 - 2022/2/1
N2 - 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.
AB - 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.
KW - Cancer survivorship care
KW - Childhood cancer survivor
KW - Long-term follow-up care
KW - Person-centred care
KW - Quality of life
KW - Shared decision-making
UR - http://www.scopus.com/inward/record.url?scp=85121714471&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.ejca.2021.10.035
DO - https://doi.org/10.1016/j.ejca.2021.10.035
M3 - Article
C2 - 34953441
SN - 0959-8049
VL - 162
SP - 34
EP - 44
JO - European Journal of Cancer
JF - European Journal of Cancer
ER -