TY - JOUR
T1 - Barriers and facilitators to implementation of the interoperable Survivorship Passport (SurPass) v2.0 in 6 European countries
T2 - a PanCareSurPass online survey study
AU - van den Oever, Selina R.
AU - de Beijer, Ismay A. E.
AU - Kremer, Leontien C. M.
AU - Alfes, Marie
AU - Balaguer, Julia
AU - Bardi, Edit
AU - Nieto, Adela Cañete
AU - Cangioli, Giorgio
AU - Charalambous, Eliana
AU - Chronaki, Catherine
AU - Costa, Tiago
AU - Degelsegger, Alexander
AU - Düster, Vanessa
AU - Filbert, Anna-Liesa
AU - Grabow, Desiree
AU - Gredinger, Gerald
AU - Gsell, Hannah
AU - Haupt, Riccardo
AU - van Helvoirt, Maria
AU - Ladenstein, Ruth
AU - Langer, Thorsten
AU - Laschkolnig, Anja
AU - Muraca, Monica
AU - Rascon, Jelena
AU - Schreier, G. nter
AU - Tomasikova, Zuzana
AU - Tormo, Maria Teresa
AU - Trinkunas, Justas
AU - Trollip, Jessica
AU - Trunner, Kathrin
AU - Uyttebroeck, Anne
AU - van der Pal, Helena J. H.
AU - Pluijm, Saskia M. F.
AU - on behalf of the PanCareSurPass consortium
AU - Niehoff, Dorothea
AU - Walz, Diana
AU - Erdmann, Friederike
AU - Spix, Claudia
AU - Lightwood, Simone
AU - Bagnasco, Francesca
AU - Cavalca, Giacomo
AU - Oberti, Sara
AU - Nicolas, Brigitte
AU - Lemiere, Jurgen
AU - Renard, Marleen
AU - Michiels, An
AU - Kock-Schoppenhauer, Ann-Kristin
AU - Hildebrand, Lea
AU - Kremer, Leontien
AU - van der Pal, Heleen
AU - van der Pal, Heleen
N1 - Funding Information: Naturally, in order to hire additional staff, sufficient monetary resources are a prerequisite. Yet the results from this online survey show that there is a need for financial support to implement the interoperable SurPass. LTFU care program managers from each of the PCSP centres were in agreement that CCSs should not be asked to pay a monetary contribution upon receiving a SurPass, which might inadvertently worsen LTFU care access disparities. Nonetheless, they also deemed it unlikely that they would receive financial support from external parties such as patient organisations. Accordingly, possible reimbursement options for CCSs or other ways to acquire additional funding should be further investigated. Publisher Copyright: © 2023, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.
PY - 2023
Y1 - 2023
N2 - Purpose: Long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) is essential to improve and maintain their quality of life. The Survivorship Passport (SurPass) is a digital tool which can aid in the delivery of adequate LTFU care. During the European PanCareSurPass (PCSP) project, the SurPass v2.0 will be implemented and evaluated at six LTFU care clinics in Austria, Belgium, Germany, Italy, Lithuania and Spain. We aimed to identify barriers and facilitators to the implementation of the SurPass v2.0 with regard to the care process as well as ethical, legal, social and economical aspects. Methods: An online, semi-structured survey was distributed to 75 stakeholders (LTFU care providers, LTFU care program managers and CCSs) affiliated with one of the six centres. Barriers and facilitators identified in four centres or more were defined as main contextual factors influencing implementation of SurPass v2.0. Results: Fifty-four barriers and 50 facilitators were identified. Among the main barriers were a lack of time and (financial) resources, gaps in knowledge concerning ethical and legal issues and a potential increase in health-related anxiety in CCSs upon receiving a SurPass. Main facilitators included institutions’ access to electronic medical records, as well as previous experience with SurPass or similar tools. Conclusions: We provided an overview of contextual factors that may influence SurPass implementation. Solutions should be found to overcome barriers and ensure effective implementation of SurPass v2.0 into routine clinical care. Implications for Cancer Survivors: These findings will be used to inform on an implementation strategy tailored for the six centres.
AB - Purpose: Long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) is essential to improve and maintain their quality of life. The Survivorship Passport (SurPass) is a digital tool which can aid in the delivery of adequate LTFU care. During the European PanCareSurPass (PCSP) project, the SurPass v2.0 will be implemented and evaluated at six LTFU care clinics in Austria, Belgium, Germany, Italy, Lithuania and Spain. We aimed to identify barriers and facilitators to the implementation of the SurPass v2.0 with regard to the care process as well as ethical, legal, social and economical aspects. Methods: An online, semi-structured survey was distributed to 75 stakeholders (LTFU care providers, LTFU care program managers and CCSs) affiliated with one of the six centres. Barriers and facilitators identified in four centres or more were defined as main contextual factors influencing implementation of SurPass v2.0. Results: Fifty-four barriers and 50 facilitators were identified. Among the main barriers were a lack of time and (financial) resources, gaps in knowledge concerning ethical and legal issues and a potential increase in health-related anxiety in CCSs upon receiving a SurPass. Main facilitators included institutions’ access to electronic medical records, as well as previous experience with SurPass or similar tools. Conclusions: We provided an overview of contextual factors that may influence SurPass implementation. Solutions should be found to overcome barriers and ensure effective implementation of SurPass v2.0 into routine clinical care. Implications for Cancer Survivors: These findings will be used to inform on an implementation strategy tailored for the six centres.
KW - Aftercare
KW - Cancer survivors
KW - Care plan
KW - Long-term follow-up care
KW - Paediatric oncology
KW - SurPass
KW - Survivorship
KW - Survivorship Passport
UR - http://www.scopus.com/inward/record.url?scp=85165092062&partnerID=8YFLogxK
U2 - https://doi.org/10.1007/s11764-023-01335-y
DO - https://doi.org/10.1007/s11764-023-01335-y
M3 - Article
C2 - 36808389
SN - 1932-2259
JO - Journal of Cancer Survivorship
JF - Journal of Cancer Survivorship
ER -