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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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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.

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Data availability

Study participants did not consent to data sharing outside the PanCareSurPass project. Access to participant data is therefore limited to national and international supervisory authorities. Upon request, the study protocol can be made available (please send an email to s.r.vandenoever-2@prinsesmaximacentrum.nl).

Abbreviations

CCS:

Childhood cancer survivor

HCP:

Healthcare professional

LTFU:

Long-term follow-up

PCFU:

PanCareFollowUp

PCSP:

PanCareSurPass

SCP:

Survivorship care plan

SurPass:

Survivorship Passport

TS:

Treatment summary

References

  1. Steliarova-Foucher E, Fidler MM, Colombet M, Lacour B, Kaatsch P, Pineros M, et al. Changing geographical patterns and trends in cancer incidence in children and adolescents in Europe, 1991-2010 (Automated Childhood Cancer Information System): a population-based study. Lancet Oncol. 2018;19(9):1159–69.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Gatta G, Botta L, Rossi S, Aareleid T, Bielska-Lasota M, Clavel J, et al. Childhood cancer survival in Europe 1999-2007: results of EUROCARE-5--a population-based study. Lancet Oncol. 2014;15(1):35–47.

    Article  PubMed  Google Scholar 

  3. van Deuren S, Penson A, van Dulmen-den Broeder E, Grootenhuis MA, van der Heiden-van der Loo M, Bronkhorst E, et al. Prevalence and risk factors of cancer-related fatigue in childhood cancer survivors: A DCCSS. LATER study. Cancer. 2022;128(5):1110-1121.

    Article  PubMed  Google Scholar 

  4. Christen S, Roser K, Mulder RL, Ilic A, Lie HC, Loonen JJ, et al. Recommendations for the surveillance of cancer-related fatigue in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. J Cancer Surviv. 2020;14(6):923–38.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Mulder RL, Font-Gonzalez A, Hudson MM, van Santen HM, Loeffen EAH, Burns KC, et al. Fertility preservation for female patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group. Lancet Oncol. 2021;22(2):e45–56.

    Article  PubMed  Google Scholar 

  6. Mulder RL, Font-Gonzalez A, Green DM, Loeffen EAH, Hudson MM, Loonen J, et al. Fertility preservation for male patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group. Lancet Oncol. 2021;22(2):e57–67.

    Article  PubMed  Google Scholar 

  7. Norsker FN, Rechnitzer C, Andersen EW, Linnet KM, Kenborg L, Holmqvist AS, et al. Neurologic disorders in long-term survivors of neuroblastoma - a population-based cohort study within the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) research program. Acta Oncol. 2020;59(2):134–40.

    Article  CAS  PubMed  Google Scholar 

  8. Armenian SH, Hudson MM, Mulder RL, Chen MH, Constine LS, Dwyer M, et al. Recommendations for cardiomyopathy surveillance for survivors of childhood cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Lancet Oncol. 2015;16(3):e123–36.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Bardi E, Mulder RL, van Dalen EC, Bhatt NS, Ruble KA, Burgis J, et al. Late hepatic toxicity surveillance for survivors of childhood, adolescent and young adult cancer: Recommendations from the international late effects of childhood cancer guideline harmonization group. Cancer Treat Rev. 2021;100:102296.

    Article  CAS  PubMed  Google Scholar 

  10. Teepen JC, van Leeuwen FE, Tissing WJ, van Dulmen-den BE, van den Heuvel-Eibrink MM, van der Pal HJ, et al. Long-term risk of subsequent malignant neoplasms after treatment of childhood cancer in the DCOG LATER Study Cohort: Role of chemotherapy. J Clin Oncol. 2017;35(20):2288–98.

    Article  CAS  PubMed  Google Scholar 

  11. Friend AJ, Feltbower RG, Hughes EJ, Dye KP, Glaser AW. Mental health of long-term survivors of childhood and young adult cancer: A systematic review. Int J Cancer. 2018;143(6):1279–86.

    Article  CAS  PubMed  Google Scholar 

  12. Frederiksen LE, Mader L, Feychting M, Mogensen H, Madanat-Harjuoja L, Malila N, et al. Surviving childhood cancer: A systematic review of studies on risk and determinants of adverse socioeconomic outcomes. Int J Cancer. 2019;144(8):1796–823.

    Article  CAS  PubMed  Google Scholar 

  13. Signorelli C, Wakefield CE, Fardell JE, Wallace WHB, Robertson EG, McLoone JK, et al. The impact of long-term follow-up care for childhood cancer survivors: A systematic review. Crit Rev Oncol Hematol. 2017;114:131–8.

    Article  PubMed  Google Scholar 

  14. Michel G, Mulder RL, van der Pal HJH, Skinner R, Bardi E, Brown MC, et al. Evidence-based recommendations for the organization of long-term follow-up care for childhood and adolescent cancer survivors: A report from the PanCareSurFup Guidelines Working Group. J Cancer Surviv. 2019;13(5):759–72.

    Article  PubMed  Google Scholar 

  15. Baird H, Patterson P, Medlow S, Allison KR. Understanding and improving survivorship care for adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2019;8(5):581–6.

    Article  PubMed  Google Scholar 

  16. Essig S, Skinner R, von der Weid NX, Kuehni CE, Michel G. Follow-up programs for childhood cancer survivors in Europe: A questionnaire survey. PLoS One. 2012;7(12):e53201.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  17. Haupt R, Essiaf S, Dellacasa C, Ronckers CM, Caruso S, Sugden E, et al. The 'Survivorship Passport' for childhood cancer survivors. Eur J Cancer. 2018;102:69–81.

    Article  PubMed  Google Scholar 

  18. van Kalsbeek RJ, van der Pal HJH, Hjorth L, Winther JF, Michel G, Haupt R, et al. The European multistakeholder PanCareFollowUp project: Novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers. Eur J Cancer. 2021;153:74–85.

    Article  PubMed  Google Scholar 

  19. Carroll AB. Corporate social responsibility: evolution of a definitional construct. Bus Soc. 1999;38(3):268–95.

    Article  Google Scholar 

  20. de Beijer IAE, Trollip J, van den Oever SR, van Dalen EC, Levitt G, et al. Barriers and facilitators of implementing long-term follow-up care for childhood, adolescent, and young adult cancer survivors: A systematic literature review. Unpublished.

  21. Vaismoradi M, Jones J, Turunen H, Snelgrove S. Theme development in qualitative content analysis and thematic analysis. J Nurs Educ Pract. 2016;6(5):100–10.

    Google Scholar 

  22. de Beijer IAE, van den Oever SR, Charalambous E, Cangioli G, Balaguer J, et al. Information and Technology (IT)-related barriers and facilitators to implementation of a new European eHealth Solution: the Digital Survivorship Passport (SurPass v2.0). Unpublished.

  23. Dulko D, Pace CM, Dittus KL, Sprague BL, Pollack LA, Hawkins NA, et al. Barriers and facilitators to implementing cancer survivorship care plans. Oncol Nurs Forum. 2013;40(6):575–80.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Salz T, McCabe MS, Onstad EE, Baxi SS, Deming RL, Franco RA, et al. Survivorship care plans: Is there buy-in from community oncology providers? Cancer. 2014;120(5):722–30.

    Article  PubMed  Google Scholar 

  25. Jefford M, Lotfi-Jam K, Baravelli C, Grogan S, Rogers M, Krishnasamy M, et al. Development and pilot testing of a nurse-led posttreatment support package for bowel cancer survivors. Cancer Nurs. 2011;34(3):E1–10.

    Article  PubMed  Google Scholar 

  26. Spain PD, Oeffinger KC, Candela J, McCabe M, Ma X, Tonorezos ES. Response to a treatment summary and care plan among adult survivors of pediatric and young adult cancer. J Oncol Pract. 2012;8(3):196–202.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Brothers BM, Easley A, Salani R, Andersen BL. Do survivorship care plans impact patients' evaluations of care? A randomized evaluation with gynecologic oncology patients. Gynecol Oncol. 2013;129(3):554–8.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Nicolaije KA, Ezendam NP, Vos MC, Pijnenborg JM, Boll D, Boss EA, et al. Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: Longitudinal outcomes of a pragmatic, cluster randomized trial. J Clin Oncol. 2015;33(31):3550–3559.

  29. de Rooij BH, Ezendam NPM, Nicolaije KAH, Lodder P, Vos MC, Pijnenborg JMA, et al. Survivorship care plans have a negative impact on long-term quality of life and anxiety through more threatening illness perceptions in gynecological cancer patients: The ROGY care trial. Qual Life Res. 2018;27(6):1533–44.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Hill RE, Wakefield CE, Cohn RJ, Fardell JE, Brierley ME, Kothe E, et al. Survivorship care plans in cancer: A meta-analysis and systematic review of care plan outcomes. Oncologist. 2020;25(2):e351–e72.

    Article  PubMed  Google Scholar 

  31. Kohl S. European health data space proposal launched. Eur J Hosp Pharm. 2022;29(4):240.

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgements

We would like to thank all respondents for their participation in this study. In addition, we would like to acknowledge Ramona Tallone (Istituto Giannina Gaslini, Genova, Italy), Andrea Beccaria (Istituto Giannina Gaslini, Genova, Italy), Marisa Correcher (Hospital Universitario y Politécnico La Fe, Valencia, Spain) and Antonio Orduña (Hospital Universitario y Politécnico La Fe, Valencia, Spain) for their contribution to survey development and/or data collection.

Funding

This work was supported by the European Union’s Horizon 2020 research and innovation programme (grant number: 899999). The funding source was not involved in study design, data collection, data analysis, interpretation, writing of the manuscript and the decision to submit this article for publication.

Author information

Authors and Affiliations

  1. Princess Máxima Center for Pediatric Oncology, Heidelberglaan 25, 3584 CS, Utrecht, The Netherlands

    Selina R. van den Oever, Ismay A. E. de Beijer, Leontien C. M. Kremer, Jessica Trollip, Helena J. H. van der Pal & Saskia M. F. Pluijm

  2. University Medical Center Utrecht, Wilhelmina Children’s Hospital, Utrecht, The Netherlands

    Leontien C. M. Kremer

  3. Emma Children’s Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands

    Leontien C. M. Kremer

  4. CCI Europe, Vienna, Austria

    Marie Alfes, Tiago Costa, Hannah Gsell & Zuzana Tomasikova

  5. Hospital Universitario y Politécnico La Fe, Valencia, Spain

    Julia Balaguer & Adela Cañete Nieto

  6. St. Anna Children’s Hospital, Vienna, Austria

    Edit Bardi & Ruth Ladenstein

  7. Department of Paediatrics and Adolescent Medicine, Johannes Kepler University Linz, Kepler University Hospital, Linz, Austria

    Edit Bardi

  8. HL7 Europe, Brussels, Belgium

    Giorgio Cangioli, Eliana Charalambous & Catherine Chronaki

  9. Gesundheit Österreich GMBH, Vienna, Austria

    Alexander Degelsegger, Gerald Gredinger, Anja Laschkolnig & Kathrin Trunner

  10. St. Anna Children’s Cancer Research Institute, Vienna, Austria

    Vanessa Düster & Ruth Ladenstein

  11. University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany

    Anna-Liesa Filbert & Desiree Grabow

  12. IRCCS Istituto Giannina Gaslini, Genova, Italy

    Riccardo Haupt & Monica Muraca

  13. University Hospitals Leuven, KU, Louvain, Belgium

    Maria van Helvoirt

  14. Universitatsklinikum Schleswig-Holstein, Campus Lubeck, Lubeck, Germany

    Thorsten Langer & Anne Uyttebroeck

  15. Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania

    Jelena Rascon & Justas Trinkunas

  16. AIT Austrian Institute of Technology, Graz, Austria

    Günter Schreier

  17. Instituto Investigación Sanitaria La Fe, Valencia, Spain

    Maria Teresa Tormo

Authors
  1. Selina R. van den Oever
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  2. Ismay A. E. de Beijer
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  3. Leontien C. M. Kremer
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  4. Marie Alfes
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  5. Julia Balaguer
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  6. Edit Bardi
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  7. Adela Cañete Nieto
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  8. Giorgio Cangioli
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  9. Eliana Charalambous
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  10. Catherine Chronaki
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  11. Tiago Costa
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  12. Alexander Degelsegger
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  13. Vanessa Düster
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  14. Anna-Liesa Filbert
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  15. Desiree Grabow
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  16. Gerald Gredinger
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  17. Hannah Gsell
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  18. Riccardo Haupt
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  19. Maria van Helvoirt
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  20. Ruth Ladenstein
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  21. Thorsten Langer
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  22. Anja Laschkolnig
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  23. Monica Muraca
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  24. Jelena Rascon
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  25. Günter Schreier
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  26. Zuzana Tomasikova
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  27. Maria Teresa Tormo
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  28. Justas Trinkunas
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  29. Jessica Trollip
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  30. Kathrin Trunner
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  31. Anne Uyttebroeck
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  32. Helena J. H. van der Pal
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  33. Saskia M. F. Pluijm
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Consortia

on behalf of the PanCareSurPass consortium

  • Desiree Grabow
  • , Anna-Liesa Filbert
  • , Dorothea Niehoff
  • , Diana Walz
  • , Friederike Erdmann
  • , Claudia Spix
  • , Riccardo Haupt
  • , Monica Muraca
  • , Simone Lightwood
  • , Francesca Bagnasco
  • , Giacomo Cavalca
  • , Sara Oberti
  • , Brigitte Nicolas
  • , Ruth Ladenstein
  • , Edit Bardi
  • , Vanessa Düster
  • , Anne Uyttebroeck
  • , Maria van Helvoirt
  • , Jurgen Lemiere
  • , Marleen Renard
  • , An Michiels
  • , Thorsten Langer
  • , Ann-Kristin Kock-Schoppenhauer
  • , Lea Hildebrand
  • , Anke Neumann
  • , Anne-Katrin Jahnke
  • , Jelena Rascon
  • , Justas Trinkūnas
  • , Audronė Ciesiūnienė
  • , Paulius Ragauskas
  • , Adela Cañete Nieto
  • , Julia Balaguer Guill
  • , Maria Teresa Tormo Alcañiz
  • , Antonio Orduña Galan
  • , Marisa Correcher Palau
  • , Lucas Cervero Beltrán
  • , Vicente Pons Tamarit
  • , Davide Saraceno
  • , Alessandra Berti
  • , Carlo Contino
  • , Nikos Thomopulos
  • , Giulia Stabile
  • , Maria Franca Tomassi
  • , Igor Zamberlan
  • , Barbara Nichel
  • , Günter Schreier
  • , Dieter Hayn
  • , Karl Kreiner
  • , Stefan Beyer
  • , Catherine Chronaki
  • , Giorgio Cangioli
  • , Eliana Charalambous
  • , Alexander Degelsegger-Márquez
  • , Gerald Gredinger
  • , Kathrin Trunner
  • , Florian Trauner
  • , Anja Laschkolnig
  • , Leontien Kremer
  • , Heleen van der Pal
  • , Saskia Pluijm
  • , Selina van den Oever
  • , Ismay de Beijer
  • , Jessica Trollip
  • , Emma Hardijzer
  • , Heleen van der Pal
  • , Jaap den Hartogh
  • , Jeroen te Dorsthorst
  • , Samira Essiaf
  • , William Sciberras
  • , Anita Kienesberger
  • , Hannah Gsell
  • , Carina Schneider
  •  & Zuzana Tomasikova

Contributions

All authors contributed to the conception and design of this study and design of the surveys. Ethical approvals were obtained and data were collected by authors affiliated with the six participating institutions. Data were analysed by Selina R. van den Oever, Ismay A. E. de Beijer, Leontien C. M. Kremer, Helena J. H. van der Pal and Saskia M. F. Pluijm, and results were interpreted by all authors. The manuscript was drafted by Selina R. van den Oever and critically revised by all authors. All authors approved the final version of this manuscript.

Corresponding author

Correspondence to Selina R. van den Oever.

Ethics declarations

Conflict of interest

The authors declare no competing interests.

Ethics approval

Ethical review board or institutional approvals were required and obtained in Belgium (Ethics Committee Research UZ Leuven), Italy (Comitato Etico Regionale della Liguria), Germany (Ethik-Komission Universität zu Lübeck) and Spain (Comité de Ética de la Investigación con medicamentos). Institutional approval for pseudonymised data collection, analysis and storage was granted by the Princess Máxima Center, the Netherlands (Clinical Research Committee Princess Máxima Centrum). This study was performed in line with the principles of the Declaration of Helsinki.

Consent to participate

Written informed consent was obtained from all participants included in this study.

Consent for publication

All responses to the survey were pseudonymised. Participants were informed that by participating in this study, they consent to the publication of their pseudonymised responses.

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Helena J. H. van der Pal and Saskia M. F. Pluijm are joint last authors.

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van den Oever, S.R., de Beijer, I.A.E., Kremer, L.C.M. et al. Barriers and facilitators to implementation of the interoperable Survivorship Passport (SurPass) v2.0 in 6 European countries: a PanCareSurPass online survey study. J Cancer Surviv 18, 928–940 (2024). https://doi.org/10.1007/s11764-023-01335-y

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