Rebecca J van Kalsbeek1, Helena J H van der Pal2, Leontien C M Kremer3, Edit Bardi4, Morven C Brown5, Rachel Effeney6, Jeanette F Winther7, Cecilia Follin8, Jaap den Hartogh9, Riccardo Haupt10, Lars Hjorth11, Tomas Kepak12, Katerina Kepakova12, Gill Levitt13, Jacqueline J Loonen14, Marlies Mangelschots15, Monica Muraca10, Marleen Renard15, Harun Sabic16, Carina U Schneider16, Anne Uyttebroeck17, Roderick Skinner18, Renée L Mulder19. 1. Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands. Electronic address: R.J.vanKalsbeek@prinsesmaximacentrum.nl. 2. Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands; PanCare, Jacobus Bellamylaan 16, Bussum, 1401 AZ, the Netherlands. 3. Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands; Department of Paediatrics, Emma Children's Hospital, Amsterdam UMC, Meibergdreef 9, Amsterdam, 1105 AZ, the Netherlands; Faculty of Medicine, Utrecht University and Utrecht Medical Centre, Universiteitsweg 98, Utrecht, 3584 CG, the Netherlands. 4. PanCare, Jacobus Bellamylaan 16, Bussum, 1401 AZ, the Netherlands; St Anna Children's Hospital, Kinderspitalgasse 6, Vienna, 1090, Austria; Department of Paediatric and Adolescent Medicine, Kepler University Clinic, 26-30 Krankenhausstraße, Linz, 4020, Austria. 5. Population Health Sciences Institute, Newcastle University, Sir James Spence Institute, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne, NE1 4LP, UK; Newcastle University Centre for Cancer, Wolfson Childhood Cancer Research Centre, Herschel Building, Brewery Lane, Newcastle upon Tyne, NE1 7RU, UK. 6. European Society for Paediatric Oncology, c/o BLSI, Clos Chapelle-aux-Champs 30, Bte 1.30.30, Brussels, BE-1200, Belgium. 7. European Society for Paediatric Oncology, c/o BLSI, Clos Chapelle-aux-Champs 30, Bte 1.30.30, Brussels, BE-1200, Belgium; Childhood Cancer Research Group, Danish Cancer Society Research Centre, Strandboulevarden 49, Copenhagen, 2100, Denmark; Department of Clinical Medicine, Faculty of Health, Aarhus University and Aarhus University Hospital, Palle Juul-Jensens Boulevard 82, Aarhus, 8200, Denmark. 8. Oncology, Department of Clinical Sciences Lund, Lund University, Skane University Hospital, Lasarettsgatan 40, Lund, 221 85, Sweden. 9. PanCare, Jacobus Bellamylaan 16, Bussum, 1401 AZ, the Netherlands; Childhood Cancer International - Europe, Servitengasse 5/16, Vienna, 1090, Austria. 10. Epidemiology and Biostatistics Unit and DOPO Clinic, IRCCS Istituto Giannina Gaslini, Via G. Gaslini 5, Genoa, 16147, Italy. 11. Paediatrics, Department of Clinical Sciences Lund, Lund University, Skane University Hospital, Lasarettsgatan 40, Lund, 221 85, Sweden. 12. International Clinical Research Center (FNUSA-ICRC) at St. Anne's University Hospital, Masaryk University, Pekařská 53, Brno, 656 91, Czech Republic. 13. Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, WC1N 3JH, UK. 14. Department of Hematology, Radboud Institute for Health Sciences, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, the Netherlands. 15. Department of Oncology, Paediatric Oncology, KU Leuven, Belgium. 16. Childhood Cancer International - Europe, Servitengasse 5/16, Vienna, 1090, Austria. 17. Department of Oncology, Paediatric Oncology, KU Leuven, Belgium; Department of Paediatric Haematology and Oncology, University Hospitals Leuven, Herestraat 49, Leuven, 3000, Belgium. 18. Department of Paediatric and Adolescent Medicine, Kepler University Clinic, 26-30 Krankenhausstraße, Linz, 4020, Austria; Great North Children's Hospital, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne, NE1 4 LP, UK; Translational and Clinical Research Institute, Wolfson Childhood Cancer Research Centre, Herschel Building, Brewery Lane, Newcastle upon Tyne, NE1 7RU, UK. 19. Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands.
Abstract
BACKGROUND: Long-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines. METHODS: The PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated in the first Europe-wide effort to provide unified recommendations in anticipation of evidence-based guidelines. A pragmatic methodology was used to define recommendations for topics where no evidence-based IGHG recommendations exist. The objective was to describe the surveillance requirements for high-quality care while balancing the different infrastructures and resources across European health care systems. The process included two face-to-face meetings and an external consultation round involving 18 experts from 14 countries. RESULTS: Twenty-five harmonised recommendations for LTFU care were developed collaboratively and address topics requiring awareness only (n = 6), awareness, history and/or physical examination (n = 9), or additional surveillance tests (n = 10). CONCLUSIONS: The PanCareFollowUp Recommendations, representing a unique agreement across European stakeholders, emphasise awareness among survivors and health care providers in addition to tailored clinical evaluation and/or surveillance tests. They include existing IGHG guidelines and additional recommendations developed by a pragmatic methodology and will be used in the Horizon 2020-funded PanCareFollowUp project to improve health and QoL of CAYA cancer survivors.
BACKGROUND: Long-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines. METHODS: The PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated in the first Europe-wide effort to provide unified recommendations in anticipation of evidence-based guidelines. A pragmatic methodology was used to define recommendations for topics where no evidence-based IGHG recommendations exist. The objective was to describe the surveillance requirements for high-quality care while balancing the different infrastructures and resources across European health care systems. The process included two face-to-face meetings and an external consultation round involving 18 experts from 14 countries. RESULTS: Twenty-five harmonised recommendations for LTFU care were developed collaboratively and address topics requiring awareness only (n = 6), awareness, history and/or physical examination (n = 9), or additional surveillance tests (n = 10). CONCLUSIONS: The PanCareFollowUp Recommendations, representing a unique agreement across European stakeholders, emphasise awareness among survivors and health care providers in addition to tailored clinical evaluation and/or surveillance tests. They include existing IGHG guidelines and additional recommendations developed by a pragmatic methodology and will be used in the Horizon 2020-funded PanCareFollowUp project to improve health and QoL of CAYA cancer survivors.
Authors: Emily S Tonorezos; Richard J Cohn; Adam W Glaser; Jeremy Lewin; Eileen Poon; Claire E Wakefield; Kevin C Oeffinger Journal: Lancet Date: 2022-04-16 Impact factor: 202.731
Authors: Natascia Di Iorgi; Giovanni Morana; Marco Cappa; Ludovico D'Incerti; Maria Luisa Garrè; Armando Grossi; Lorenzo Iughetti; Patrizia Matarazzo; Maria Parpagnoli; Gabriella Pozzobon; Mariacarolina Salerno; Iacopo Sardi; Malgorzata Gabriela Wasniewska; Stefano Zucchini; Andrea Rossi; Mohamad Maghnie Journal: Front Endocrinol (Lausanne) Date: 2022-07-14 Impact factor: 6.055