Gisela Michel1, Renée L Mulder2, Helena J H van der Pal2, Roderick Skinner3,4, Edit Bárdi5,6, Morven C Brown7, Janine Vetsch8,9,10, Eva Frey5, Rachael Windsor11, Leontien C M Kremer2,12, Gill Levitt13. 1. Department of Health Sciences and Health Policy, University of Lucerne, Frohburgstrasse 3, Lucerne, 6002 Luzern, Switzerland. gisela.michel@unilu.ch. 2. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands. 3. Northern Institute for Cancer Research, Newcastle University, Newcastle upon Tyne, UK. 4. Department of Paediatric and Adolescent Haematology/Oncology and Children's Haemopoietic Stem Cell Transplant Unit, Great North Children's Hospital, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK. 5. St Anna Children's Hospital, Vienna, Austria. 6. Kepler Universitätsklinikum, Linz, Austria. 7. Institute of Health & Society, Newcastle University, Newcastle upon Tyne, UK. 8. Department of Health Sciences and Health Policy, University of Lucerne, Frohburgstrasse 3, Lucerne, 6002 Luzern, Switzerland. 9. School of Women's and Children's Health, UNSW Sydney, Kensington, Australia. 10. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, High Street, Randwick, NSW, 2031, Australia. 11. Children and Young People's Cancer Service, University College London Hospitals NHS Foundation Trust, London, UK. 12. Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Paediatric Oncology, Amsterdam, The Netherlands. 13. Department of Paediatric Oncology, Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK.
Abstract
PURPOSE: To facilitate the implementation of long-term follow-up (LTFU) care and improve equality of care for childhood, adolescent, and young adult (CAYA) cancer survivors, the PanCareSurFup Guidelines Working Group developed evidence-based recommendations for the organization of LTFU. METHODS: We established an international multidisciplinary guideline panel. A systematic review of the literature published from 1999 to 2017 was completed to answer six clinical questions. The guideline panel reviewed the identified studies, developed evidence summaries, appraised the quality of the body of evidence, and formulated recommendations based on the evidence, expert opinions, and the need to maintain flexibility of application across different healthcare systems. RESULTS: We provide strong recommendations based on low level evidence and expert opinions, regarding organization of LTFU care, personnel involved in LTFU care, components of LTFU care and start of LTFU care. We recommend that risk-adapted LTFU care provided under the guidance of a cancer survivorship expert service or cancer centre should be available and accessible for all CAYA cancer survivors throughout their lifespan. CONCLUSION: Despite the weak levels of evidence, successful and effective implementation of these recommendations should improve LTFU, thereby leading to better access to appropriate healthcare services and an improvement in health outcomes for CAYA cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: To improve health outcomes and quality of survivorship of current and future survivors, continued age-adapted education of survivors about the cancer, its treatment, risk of late effects, importance of health behaviours, and necessity of LTFU is important along the cancer and survivorship trajectory.
PURPOSE: To facilitate the implementation of long-term follow-up (LTFU) care and improve equality of care for childhood, adolescent, and young adult (CAYA) cancer survivors, the PanCareSurFup Guidelines Working Group developed evidence-based recommendations for the organization of LTFU. METHODS: We established an international multidisciplinary guideline panel. A systematic review of the literature published from 1999 to 2017 was completed to answer six clinical questions. The guideline panel reviewed the identified studies, developed evidence summaries, appraised the quality of the body of evidence, and formulated recommendations based on the evidence, expert opinions, and the need to maintain flexibility of application across different healthcare systems. RESULTS: We provide strong recommendations based on low level evidence and expert opinions, regarding organization of LTFU care, personnel involved in LTFU care, components of LTFU care and start of LTFU care. We recommend that risk-adapted LTFU care provided under the guidance of a cancer survivorship expert service or cancer centre should be available and accessible for all CAYA cancer survivors throughout their lifespan. CONCLUSION: Despite the weak levels of evidence, successful and effective implementation of these recommendations should improve LTFU, thereby leading to better access to appropriate healthcare services and an improvement in health outcomes for CAYA cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: To improve health outcomes and quality of survivorship of current and future survivors, continued age-adapted education of survivors about the cancer, its treatment, risk of late effects, importance of health behaviours, and necessity of LTFU is important along the cancer and survivorship trajectory.
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