Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study.
Long-term follow-up care
Open Space Technology
Paediatric oncology
SurPass
Survivorship Passport
Survivorship care
eHealth
Journal
Journal of cancer survivorship : research and practice
ISSN: 1932-2267
Titre abrégé: J Cancer Surviv
Pays: United States
ID NLM: 101307557
Informations de publication
Date de publication:
28 Nov 2023
28 Nov 2023
Historique:
received:
30
05
2023
accepted:
08
11
2023
medline:
28
11
2023
pubmed:
28
11
2023
entrez:
28
11
2023
Statut:
aheadofprint
Résumé
To identify barriers and facilitators for implementing the Survivorship Passport (SurPass) v2.0 in six long-term follow-up (LTFU) care centres in Europe. Stakeholders including childhood cancer survivors (CCSs), healthcare providers (HCPs), managers, information and technology (IT) specialists, and others, participated in six online Open Space meetings. Topics related to Care, Ethical, Legal, Social, Economic, and Information & IT-related aspects of implementing SurPass were evaluated. The study identified 115 barriers and 159 facilitators. The main barriers included the lack of standardised LTFU care in centres and network cooperation, uncertainty about SurPass accessibility, and uncertainty about how to integrate SurPass into electronic health information systems. The main facilitators included standardised and coordinated LTFU care in centres, allowing CCSs to conceal sensitive information in SurPass and (semi)automatic data transfer and filing. Key barriers to SurPass implementation were identified in the areas of care, ethical considerations, and information & IT. To address these barriers and facilitate the implementation on SurPass, we have formulated 27 recommendations. Key recommendations include using the internationally developed protocols and guidelines to implement LTFU care, making clear decisions about which parties have access to SurPass data in accordance with CCSs, and facilitating (semi)automated data transfer and filing using Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR). The findings of this study can help to implement SurPass and to ensure that cancer survivors receive high-quality LTFU care with access to the necessary information to manage their health effectively.
Identifiants
pubmed: 38015382
doi: 10.1007/s11764-023-01498-8
pii: 10.1007/s11764-023-01498-8
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Subventions
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Organisme : Horizon 2020
ID : 899999
Informations de copyright
© 2023. The Author(s).
Références
World Health Organization. Childhood cancer. https://www.who.int/news-room/fact-sheets/detail/cancer-in-children . Accessed 13 Dec 2021.
SIOP Europe: the European society for paediatric oncology. The SIOPE strategic plan a European cancer plan for children and adolescents. 2015. https://worldspanmedia.s3-eu-west-1.amazonaws.com/media/siope/PDF/the-siope-strategic-plan.PDF . Accessed August 30, 2022.
Francisci S, Guzzinati S, Dal Maso L, Sacerdote C, Buzzoni C, Gigli A. An estimate of the number of people in Italy living after childhood cancer. Int J Cancer. 2017;140(11):2444–50. https://doi.org/10.1002/ijc.30665 .
doi: 10.1002/ijc.30665
pubmed: 28233308
Hjorth L, Haupt R, Skinner R, Grabow D, Byrne J, Karner S, et al. PanCare Network Survivorship after childhood cancer: PanCare: a European Network to promote optimal long-term care. Eur J Cancer. 2015;51(10):1203–11. https://doi.org/10.1016/j.ejca.2015.04.002 .
doi: 10.1016/j.ejca.2015.04.002
pubmed: 25958037
pmcid: 5916870
Geenen MM, Cardous-Ubbink MC, Kremer LC, Van den Bos C, Van der Pal HJH, Heinen RC, et al. Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA. 2007;297(24):2705. https://doi.org/10.1001/jama.297.24.2705 .
doi: 10.1001/jama.297.24.2705
pubmed: 17595271
Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W, Robison LL. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82. https://doi.org/10.1056/nejmsa060185 .
doi: 10.1056/nejmsa060185
pubmed: 17035650
Font-Gonzalez A, Feijen E, Geskus RB, Dijkgraaf M, van der Pal H, et al. Risk and associated risk factors of hospitalization for specific health problems over time in childhood cancer survivors: a medical record linkage study. Cancer Med. 2017;6(5):1123–34. https://doi.org/10.1002/cam4.1057 .
doi: 10.1002/cam4.1057
pubmed: 28378525
pmcid: 5430098
Robison LL, Hudson MM. Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer. 2014;14(1):61–70. https://doi.org/10.1038/nrc3634 .
doi: 10.1038/nrc3634
pubmed: 24304873
Bhakta N, Liu Q, Ness KK, Baassiri M, Eissa H, Yeo F, et al. The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet. 2017;390(10112):2569–82. https://doi.org/10.1016/S0140-6736(17)31610-0 .
doi: 10.1016/S0140-6736(17)31610-0
pubmed: 28890157
pmcid: 5798235
Jankovic M, Haupt R, Spinetta JJ, Beck JD, Byrne J, Calaminus G, et al. Long-term survivors of childhood cancer: cure and care—the Erice Statement (2006) revised after 10 years (2016). J Cancer Surviv. 2018;12(5):647–50. https://doi.org/10.1007/s11764-018-0701-0 .
doi: 10.1007/s11764-018-0701-0
pubmed: 29946794
Ducassou S, Chipi M, Pouyade A, Afonso M, Demeaux JL, Ducos G, Pérel Y, Ansoborlo S. Impact of shared care program in the follow-up of childhood cancer survivors: an intervention study. Pediatr Blood Cancer. 2017;64(11): e26541. https://doi.org/10.1002/pbc.26541 .
doi: 10.1002/pbc.26541
Heirs M, Suekarran S, Slack R, Light K, Gibson F, Glaser A, Hawkins M, Phillips R. A systematic review of models of care for the follow-up of childhood cancer survivors. Pediatr Blood Cancer. 2013;60(3):351–6. https://doi.org/10.1002/pbc.24253 . (PMID: 22933379).
doi: 10.1002/pbc.24253
pubmed: 22848011
Michel G, Mulder RL, Van der Pal HJH, 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. https://doi.org/10.1007/s11764-019-00795-5 .
doi: 10.1007/s11764-019-00795-5
pubmed: 31396878
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. https://doi.org/10.1016/j.ejca.2018.07.006 .
doi: 10.1016/j.ejca.2018.07.006
pubmed: 30138773
Signorelli C, Wakefield CE, Fardell JE, 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. https://doi.org/10.1016/j.critrevonc.2017.04.007 .
doi: 10.1016/j.critrevonc.2017.04.007
pubmed: 28477741
Loonen JJ, Blijlevens NM, Prins J, Dona DJ, Den Hartogh J, Senden T, et al. Cancer survivorship care: person centered care in a multidisciplinary shared care model. Int J Integr Care. 2018 Jan 17;18(1). https://doi.org/10.5334/ijic.3046 . PMID: 29434483; PMCID: PMC5799806.
Brown MC, Levitt GA, Frey E, Bárdi E, Haupt R, Hjorth L, et al. The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors. Pediatr Blood Cancer. 2014;62(2):322–8. https://doi.org/10.1002/pbc.25310 .
doi: 10.1002/pbc.25310
pubmed: 25382221
Van Kalsbeek RJ, Mulder RL, Haupt R, Muraca M, Hjorth L, Follin C, et al. The PanCareFollowUp care intervention: a European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer. Eur J Cancer. 2022;162:34–44. https://doi.org/10.1016/j.ejca.2021.10.035 .
doi: 10.1016/j.ejca.2021.10.035
pubmed: 34953441
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. https://doi.org/10.1371/journal.pone.0053201 .
doi: 10.1371/journal.pone.0053201
pubmed: 23300889
pmcid: 3534070
Syed IA, Klassen AF, Barr R, Wang R, Dix D, Nelson M, Rosenberg-Yunger ZRS, Nathan PC. Factors associated with childhood cancer survivors’ knowledge about their diagnosis, treatment, and risk for late effects. J Cancer Surviv. 2015;10(2):363–74. https://doi.org/10.1007/s11764-015-0482-7 . (PMID: 25739797).
doi: 10.1007/s11764-015-0482-7
pubmed: 26341348
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. 2013;120(5):722–30. https://doi.org/10.1002/cncr.28472 .
doi: 10.1002/cncr.28472
pubmed: 24327371
Tonorezos ES, Barnea D, Cohn RJ, Cypriano MS, Fresneau BC, Haupt R, et al. Models of care for survivors of childhood cancer from across the globe: advancing survivorship care in the next decade. J Clin Oncol. 2018;36(21):2223–30. https://doi.org/10.1200/JCO.2017.76.5180 . (Epub 2018 Jun 8 PMID: 29883297).
doi: 10.1200/JCO.2017.76.5180
pubmed: 29874138
pmcid: 6053299
Van Kalsbeek RJ, Van der Pal HJH, Hjorth L, Winther JF, Michel G, Haupt R, Uyttebroeck A, O’Brien K, Kepakova K, Follin C, Muraca M, Kepak T, Araujo-Soares V, Bardi E, Blondeel A, Bouwman E, Brown MC, Frederiksen LE, Essiaf S, 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. https://doi.org/10.1016/j.ejca.2021.05.030 .
doi: 10.1016/j.ejca.2021.05.030
pubmed: 34153717
de Beijer IAE, van den Oever SR, Charalambous E, Cangioli G, Balaguer J, Bardi E, et al. Information and IT-related barriers and facilitators to implementation of the digital survivorship passport (SurPassv2.0) in 6 European countries: a PanCareSurPass online survey study [submitted]. Princess Máxima Center for Paediatric Oncology, Utrecht. 2023.
van den Oever SR, de Beijer IAE, Kremer LC, Alfes M, Balaguer J, Bardi E, 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. 2023. https://doi.org/10.1007/s11764-023-01161-8 .
Owen H. Open Space technology: a user’s guide. 3rd ed. Berrett-Koehler Publishers; 2008.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. https://doi.org/10.1191/1478088706qp063oa .
doi: 10.1191/1478088706qp063oa
Schreiweis B, Pobiruchin M, Strotbaum V, Suleder J, Wiesner M, Bergh B. Barriers and facilitators to the implementation of eHealth services: systematic literature analysis. J Med Internet Res. 2019;21(11): e14197. https://doi.org/10.2196/14197 .
doi: 10.2196/14197
pubmed: 31755869
pmcid: 6898891
Delemere E, Gitonga I, Maguire R. Utility, barriers and facilitators to the use of connected health to support families impacted by paediatric cancer: a qualitative analysis. Support Care Cancer. 2022;30(8):6755–66. https://doi.org/10.1007/s00520-022-07077-4 .
doi: 10.1007/s00520-022-07077-4
pubmed: 35524147
pmcid: 9075925