Adolescents and Young Adults (AYA) with cancer; Childhood cancer; Europe’s Beating Cancer Plan (EBCP); Policy Brief; Policy Recommendations; Public Health, Environmental and Occupational Health
Abstract :
[en] Children and Adolescents and Young Adults with cancer represent a young population with specific needs, which need to be addressed in a patient- and cancer-driven way. There is an urgent need to support and extend the ongoing initiatives in Belgium. First, multidisciplinary care programmes dedicated to children need to be reviewed, and those for Adolescents and Young Adults need to be developed with close collaboration between paediatric and adult oncology and haematology teams. This needs to be done considering the entire patient journey; from cancer prevention, diagnosis, treatment, rehabilitation, follow-up of late effects, transition pathways between paediatric and adult wards, and palliative care. Second, national haemato/oncology precision programmes adapted to this young population with rare cancers, including infrastructure to manage cancer gene predisposition in CAYAs with cancers and their relatives, needs to be developed. This multi-level plan aims to ensure improved outcome with high quality of care for the young population with cancer in Belgium in line with Europe's Beating Cancer Plan initiatives.
Disciplines :
Public health, health care sciences & services
Author, co-author :
Poirel, Hélène A ; Sciensano, Cancer Centre, Sciensano, Brussels, Belgium. Helene.Antoine-Poirel@sciensano.be
Schittecatte, Gabrielle; Sciensano, Cancer Centre, Sciensano, Brussels, Belgium
Van Aelst, Fabienne; Sciensano, Cancer Centre, Sciensano, Brussels, Belgium
on behalf of the Thematic Working Group (TWG) ‘Children, Adolescents and Young Adults (CAYAs) with Cancer’
Dequiedt, Franck ; Université de Liège - ULiège > Département des sciences de la vie > Génétique et biologie moléculaires animales ; Université de Liège - ULiège > GIGA > GIGA Molecular Biology of Diseases - Gene Expression & Cancer
Language :
English
Title :
Policy brief of the Belgian Europe's Beating Cancer Plan mirror group: children, adolescents and young adults with cancer.
Members\u2019 list of the TWG \u2018CAYAs with Cancer\u2019: Ad Vandermeulen (Cliniques universitaires Saint-Luc) Alice Gerbaux (KickCancer) Christiani Andrade\u00A0Amorim (UCLouvain) An Van Damme (Cliniques Universitaires St Luc and BSPHO) Anne Uyttebroeck (University Hospitals Leuven) Benedicte Brichard (Cliniques universitaires Saint-Luc) Bram De Wilde\u00A0(UZ Gent, Ugent) Brecht Gunst (Stichting tegen Kanker) Caroline Stals (KickCancer\u2014CCI-E) Chlo\u00EB De Witte\u00A0(UZ Gent) Christiane Jungels (HUB Institut Jules Bordet) Christine Devalck (HUB H\u00F4pital Universitaire des enfants Reine Fabiola) Claire Geurten (CHU Li\u00E8ge) Daan Dierickx (UZ Leuven) Delfien Bogaert (UZ Gent) Delphine Heenen (KickCancer) Elien Romaen (UZ Antwerpen) Elisa Balducci (SPF Sant\u00E9 Publique) Els Van Valckenborgh (Sciensano) Evi Lippens (U Gent) Franck Dequiedt (Uli\u00E8ge) Gabriel Levy (Cliniques universitaires Saint-Luc, UCLouvain) Hans Neefs (Kom op Tegen Kanker) Heidi Segers (UZ Leuven) Ibrahim Chiairi (U Antwerpen) Isabelle Demeestere (HUB Erasme) Johan De Munter (UZ Gent) Joris Verlooy (UZ Antwerpen) Julie Messiaen (University Hospitals Leuven) JurgenLemiere (UZ Leuven / KU Leuven) Karen Van Beek (UZ Leuven) Karen Vandenabeele (UZ Leuven) Katrien Maes (UZ Antwerpen) Kleo Dubois (C\u00E9dric H\u00E8le instituut) Laura Polastro (HUB Institut Jules Bordet) Laurens Van Camp (UZ Gent) Lien Van De Voorde (AZ St-Lucas Gent) Lore Lapeire (UZ Gent) Manon Le Roux (Cliniques universitaires Saint-Luc) Marcela Chavez (CHU Li\u00E8ge) Margherita Condorelli (HUB Erasme) Marie Caillier (Centre de Psycho-Oncologie asbl) Marie Vander Haegen (U Li\u00E8ge) Nancy Van Damme (Belgian Cancer Registry) Nathalie Belpame (UZ Gent) Olga Kholmanskikh (FAMHP) Paulina Bartoszk (Cliniques Universitaires Saint-Luc, Institut IRAII) PaulineMazilier (HUB H\u00F4pital Universitaire des enfants Reine Fabiola) Pierre Mayeur (BSPHO) Pierre Philippet (CHC MontL\u00E9gia) Saar Vandekeere (MSD Belgium) Sabine Verschueren (KU Leuven) SandraJacobs\u00A0(UZ Leuven) Sofie Moreels (UZ Gent) Stefan Gijssels (Patient Expert Center) Tom Boterberg (UZ Gent) Toon Van Genechten (UZ Antwerpen) Valentina Albarani (National Contact Point (NCP) Wallonie-Belgium) This article has been published as part of Archives of Public Health Volume 82 Supplement 1, 2024: Coming together to fight cancer: a series of policy briefs taking stock of the implementation of Europe\u2019s Beating Cancer Plan (EBCP) in Belgium\u201D. The full contents of the supplement are available online at https://archpublichealth.biomedcentral.com/articles/supplements/volume-82-supplement-1.
Europe’s Beating Cancer Plan. https://health.ec.europa.eu/system/files/2022-02/eu_cancer-plan_en_0.pdf. Accessed 4 July 2023.
European Reference Network for Paediatric Oncology. https://paedcan.ern-net.eu/. Accessed 4 Oct 2023.
EU Network of Youth Cancer Survivors - EU-CAYAS-NET. https://health.ec.europa.eu/non-communicable-diseases/cancer/europes-beating-cancer-plan-eu4health-financed-projects/projects/eu-cayas-net_en. Accessed 18 Mar 2024.
A. Ferrari D. Stark F.A. Peccatori L. Fern V. Laurence N. Gaspar I. Bozovic-Spasojevic O. Smith J. De Munter K. Derwich L. Hjorth W.T.A. van der Graaf L. Soanes S. Jezdic A. Blondeel S. Bielack J.Y. Douillard G. Mountzios E. Saloustros Adolescents and young adults (AYA) with cancer: a position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE) ESMO Open 2021 6 2 100096 1:STN:280:DC%2BB3sbotFyqtA%3D%3D 10.1016/j.esmoop.2021.100096 33926710 8103533
Belgian Cancer Registry, Brussels, 2024.
Arrêté royal fixant les normes auxquelles un programme de soins pour enfants doit répondre pour être agréé. https://etaamb.openjustice.be/fr/arrete-royal-du-02-avril-2014_n2014024121.html. Koninklijk besluit houdende vaststelling van de normen waaraan het zorgprogramma voor kinderen moet voldoen om erkend te worden. https://etaamb.openjustice.be/nl/koninklijk-besluit-van-02-april-2014_n2014024121. Accessed 4 July 2023.
Note de Politique Générale – Santé; Beleidsnota – Gezondheid. Chambre des représentants de Belgique; Belgische Kamer van Volksvertegenwoordigers. 26 Oct 2023. https://vandenbroucke.belgium.be/sites/default/files/articles/Beleidsnota%20Gezondheid.pdf, Accessed 11 March 2024.
Convention entre le comité de l’assurance du service des soins de santé de l’INAMI et les centres hémato-oncologiques pédiatriques [Will be published on the RIZIV_INAMI website soon].
Convention entre le comité de l’assurance du service des soins de santé de l’INAMI et les établissements hospitaliers pour le financement des équipes de référence AJA visant à soutenir des soins sur mesure aux AJA atteints d’un cancer. Note CSS 2023/321 (8 November 2023). https://www.inami.fgov.be/fr/actualites/cancer-une-prise-en-charge-sur-mesure-pour-les-adolescents-et-jeunes-adultes-grace-a-notre-financement-d-equipes-de-reference-aja. Overeenkomst tussen het verzekeringscomité van de gezondheidszorgdienst van het RIZIV en de ziekenhuizen voor de financiering van AJA-referentieteams met als doel op maat gemaakte zorg te ondersteunen voor AYA's (adolescenten en jongvolwassenen) die getroffen zijn door kanker. Nota CSS 2023/321 (8 November 2023) https://www.riziv.fgov.be/nl/nieuws/zorg-op-maat-voor-adolescenten-en-jongvolwassenen-met-kanker-dankzij-onze-vergoeding-van-aya-referentieteams, Accessed 11 March 2023.
Neefs H. Een blauwdruk voor leeftijdsspecifieke zorg voor jongeren met kanker in Vlaanderen. Kom Op Tegen Kanker. 2018. https://www.komoptegenkanker.be/sites/default/files/media/2018-10/aya_zorg_visie_kom_op_tegen_kanker.pdf. Accessed 18 Mar 2024.
Care4AYA. https://www.care4aya.be/. Accessed 18 March 2024.
Cédric Hèle Instituut. https://www.chicom.be/. Accessed on 18 March 2024.
Joint Action on Network of Expertise – JANE. https://jane-project.eu/. Accessed 18 Mar 2024.
Mus Liselot, Bram De Wilde, Catherine Van Der Straeten, Barbara De Moerloose, Sandra Jacobs, Sylvie Rottey, Marie-Francoise Dresse, and Ilse De Reze. The TEARDRoP (Team early drug development in Paediatric oncology) consortium: to help Research find its way to improved treatments for children with cancer. OncoPoint Symposium 2022, Abstracts. Presented at the OncoPoint Symposium 2022, Ghent; 2022.
Building the EU Cancer and Health Genomics platform - Can.Heal. https://canheal.eu/. Accessed 4 Oct 2023.
Joint Action on Prevention of Non Communicable Diseases – JAPreventNCD. Klepp K. I. (2023). JAPreventNCD. The European Journal of Public Health, 33 (Suppl 2), ckad160.438. https://doi.org/10.1093/eurpub/ckad160.438.
BCR registration projects: Paediatrics – Late Effects (PLE). https://kankerregister.org/nl/profplatform/registratieprojecten/ple; https://kankerregister.org/fr/profplatform/projets-denregistrement/ple. Accessed 18 Mar 2024.
PRINCESS: PReserving fertility and quality of life IN Belgian female paediatric CancEr SurvivorS https://kanker.be/projecten/team-van-piette-caroline-de-ville-de-goyet-maelle-dedeken-laurence-2022/; https://cancer.be/projets/equipes-de-caroline-piette-maelle-de-ville-de-goyet-laurence-dedeken-2022/. Accessed 18 M 2024.
AMH as a Predictor of Infertility Risk in Children With Cancer (CHANCE), Erasme University Hospital. https://classic.clinicaltrials.gov/ct2/show/NCT02595255. Accessed 18 Mar 2024
PanCareSurPass. https://www.pancaresurpass.eu/. Accessed 4 Oct 2023.
Lambertini, M., Peccatori, F. A., Demeestere, I., Amant, F., Wyns, C., Stukenborg, J. B., Paluch-Shimon, S., Halaska, M. J., Uzan, C., Meissner, J., von Wolff, M., Anderson, R. A., Jordan, K., & ESMO Guidelines Committee. Electronic address: clinicalguidelines@esmo.org. Fertility preservation and post-treatment pregnancies in post-pubertal cancer patients: ESMO Clinical Practice Guidelines†. Ann Oncol. 2020;31(12):1664–1678. https://doi.org/10.1016/j.annonc.2020.09.006
Mulder, R. L., Font-Gonzalez, A., Green, D. M., Loeffen, E. A. H., Hudson, M. M., Loonen, J., Yu, R., Ginsberg, J. P., Mitchell, R. T., Byrne, J., Skinner, R., Anazodo, A., Constine, L. S., de Vries, A., Jahnukainen, K., Lorenzo, A., Meissner, A., Nahata, L., Dinkelman-Smit, M., Tournaye, H., … PanCareLIFE Consortium. 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–e67. https://doi.org/10.1016/S1470-2045(20)30582-9.
Belgian Paediatric Palliative Care. https://bppc.be/2021. Accessed 23 Oct 2023.
Cancer Centre, Sciensano. https://www.sciensano.be/en/about-sciensano/sciensanos-organogram/cancer-centre. Accessed 18 Mar 2024.
T. Bauters D. Heenen K. Norga A. Van Damme A. Uyttebroeck G. Laureys Off-label drug use in paediatric haemato-oncology patients: financial implications and proposed solutions for Belgian patients Eur J Pediatr 2021 180 9 3067 3071 1:STN:280:DC%2BB2c7pt1Cjtw%3D%3D 10.1007/s00431-021-04150-8 34137919