Barriers and facilitators to implementation of the interoperable Survivorship Passport (SurPass) v2.0 in 6 European countries: a PanCareSurPass online survey study

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...

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Published inJournal of cancer survivorship Vol. 18; no. 3; pp. 928 - 940
Main Authors van den Oever, Selina R., de Beijer, Ismay A. E., Kremer, Leontien C. M., Alfes, Marie, Balaguer, Julia, Bardi, Edit, Nieto, Adela Cañete, Cangioli, Giorgio, Charalambous, Eliana, Chronaki, Catherine, Costa, Tiago, Degelsegger, Alexander, Düster, Vanessa, Filbert, Anna-Liesa, Grabow, Desiree, Gredinger, Gerald, Gsell, Hannah, Haupt, Riccardo, van Helvoirt, Maria, Ladenstein, Ruth, Langer, Thorsten, Laschkolnig, Anja, Muraca, Monica, Rascon, Jelena, Schreier, Günter, Tomasikova, Zuzana, Tormo, Maria Teresa, Trinkunas, Justas, Trollip, Jessica, Trunner, Kathrin, Uyttebroeck, Anne, van der Pal, Helena J. H., Pluijm, Saskia M. F.
Format Journal Article
LanguageEnglish
Published New York Springer US 01.06.2024
Springer Nature B.V
Subjects
Cancer
Cancer Survivors - psychology
Children
Consortia
Electronic medical records
Ethics
Europe
Female
Health Informatics
Health Promotion and Disease Prevention
Humans
Male
Medicine
Medicine & Public Health
Neoplasms - therapy
Oncology
Pediatrics
Personal health
Primary Care Medicine
Public Health
Quality of Life
Quality of Life Research
Social responsibility
Stakeholders
Surveillance
Surveys
Surveys and Questionnaires
Survival
Survivor
Survivorship
Europe
Cancer survivors
Survivorship Passport
Long-term follow-up care
Aftercare
Paediatric oncology
SurPass
Care plan
Survivorship
Online AccessGet full text
ISSN1932-2259
1932-2267
1932-2267
DOI10.1007/s11764-023-01335-y

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Abstract 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.
AbstractList PurposeLong-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.MethodsAn 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.ResultsFifty-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.ConclusionsWe 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 SurvivorsThese findings will be used to inform on an implementation strategy tailored for the six centres.
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.PURPOSELong-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.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.METHODSAn 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.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.RESULTSFifty-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.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.CONCLUSIONSWe 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.These findings will be used to inform on an implementation strategy tailored for the six centres.IMPLICATIONS FOR CANCER SURVIVORSThese findings will be used to inform on an implementation strategy tailored for the six centres.
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.
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. 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. 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. 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. These findings will be used to inform on an implementation strategy tailored for the six centres.
Author Trunner, Kathrin
van der Pal, Helena J. H.
Chronaki, Catherine
Charalambous, Eliana
Alfes, Marie
Gredinger, Gerald
Rascon, Jelena
Kremer, Leontien C. M.
van Helvoirt, Maria
Degelsegger, Alexander
Uyttebroeck, Anne
Langer, Thorsten
Gsell, Hannah
Nieto, Adela Cañete
Ladenstein, Ruth
Laschkolnig, Anja
Haupt, Riccardo
Schreier, Günter
Cangioli, Giorgio
Düster, Vanessa
Pluijm, Saskia M. F.
Grabow, Desiree
van den Oever, Selina R.
Tomasikova, Zuzana
Balaguer, Julia
Costa, Tiago
Tormo, Maria Teresa
Trinkunas, Justas
Bardi, Edit
Muraca, Monica
Trollip, Jessica
de Beijer, Ismay A. E.
Filbert, Anna-Liesa
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BackLink https://www.ncbi.nlm.nih.gov/pubmed/36808389$$D View this record in MEDLINE/PubMed
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CitedBy_id crossref_primary_10_2196_49910
crossref_primary_10_1007_s00432_023_05145_8
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ContentType Journal Article
Contributor Trunner, Kathrin
Erdmann, Friederike
Cavalca, Giacomo
Thomopulos, Nikos
Rascon, Jelena
Gredinger, Gerald
Uyttebroeck, Anne
Essiaf, Samira
Pluijm, Saskia
Lightwood, Simone
Spix, Claudia
Gsell, Hannah
Hayn, Dieter
Laschkolnig, Anja
Haupt, Riccardo
Renard, Marleen
Trauner, Florian
Düster, Vanessa
Tomassi, Maria Franca
Grabow, Desiree
Kienesberger, Anita
Zamberlan, Igor
Balaguer Guill, Julia
Galan, Antonio Orduña
Berti, Alessandra
Trollip, Jessica
Beyer, Stefan
Tormo Alcañiz, Maria Teresa
Chronaki, Catherine
Charalambous, Eliana
Beltrán, Lucas Cervero
den Hartogh, Jaap
Kock-Schoppenhauer, Ann-Kristin
van Helvoirt, Maria
Neumann, Anke
Schneider, Carina
Michiels, An
Degelsegger-Márquez, Alexander
Langer, Thorsten
Stabile, Giulia
Kremer, Leontien
Saraceno, Davide
Ladenstein, Ruth
van den Oever, Selina
Bagnasco, Francesca
Oberti, Sara
Lemiere, Jurgen
Nicolas, Brigitte
Schreier, Günter
Sciberras, William
Cangioli, Giorgio
Cañete Nieto, Adela
Trinkūnas, Justas
Te Dorsthorst, Jeroen
Kreiner, Karl
Correcher Palau, Marisa
Contino, Carlo
Hardijzer, Emma
Po
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Issue 3
Keywords Cancer survivors
Survivorship Passport
Long-term follow-up care
Aftercare
Paediatric oncology
SurPass
Care plan
Survivorship
Language English
License 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.
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Snippet Purpose Long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) is essential to improve and maintain their quality of life. The Survivorship...
Long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) is essential to improve and maintain their quality of life. The Survivorship Passport...
PurposeLong-term follow-up (LTFU) care for childhood cancer survivors (CCSs) is essential to improve and maintain their quality of life. The Survivorship...
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SubjectTerms Cancer
Cancer Survivors - psychology
Children
Consortia
Electronic medical records
Ethics
Europe
Female
Health Informatics
Health Promotion and Disease Prevention
Humans
Male
Medicine
Medicine & Public Health
Neoplasms - therapy
Oncology
Pediatrics
Personal health
Primary Care Medicine
Public Health
Quality of Life
Quality of Life Research
Social responsibility
Stakeholders
Surveillance
Surveys
Surveys and Questionnaires
Survival
Survivor
Survivorship
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Title Barriers and facilitators to implementation of the interoperable Survivorship Passport (SurPass) v2.0 in 6 European countries: a PanCareSurPass online survey study
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