RECOMMENDATIONS FOR LONG-TERM FOLLOW-UP CARE

Evidence-based clinical practice guidelines are essential for providing high-quality Survivorship Care and form the foundation of the Care intervention. Several evidence-based guidelines incorporating surveillance recommendations for a number of late effects have been developed by the International Guideline Harmonization Group (IGHG) and the PanCare Network, involving healthcare professionals (HCPs), researchers and survivors 1, 2, 3, 4, 5, 6, 7

In the context of the Care intervention delivered in the cohort study conducted during the PanCareFollowUp project, a consensus decision was taken to adopt the strong (green) and moderate (yellow) recommendations ‘to do’ surveillance investigations, as well as the strong recommendations ‘not to do’ (red); the (orange) ‘to do’ recommendations from the IGHG guidelines were not included.

In addition, consensus-based pragmatic recommendations were developed by PanCareFollowUp for 29 topics relevant to Survivorship Care, but where evidence-based guidelines were not expected to be completed or had not yet been started before the Care intervention cohort study initiation. 8

To develop these consensus-based recommendations, a European expert panel of specialists and survivors involved in PanCareFollowUp, as well as external experts and survivors, was formed. Four existing national long-term follow-up guidelines groups (United Kingdom Children’s Cancer and Leukaemia Group, Dutch Children’s Oncology Group, Scottish Intercollegiate Guidelines Network and the Children’s Oncology Group from North America) were used to identify, extract and compare existing recommendations. Following a robust consultation process involving 19 European countries, 25 consensus-based recommendations were agreed and published. 8

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The PanCare materials are free to use for anyone aiming to inform about late effects and long-term survivorship care. However, no financial advantage may be achieved. All communication should reference PanCare and link to the PanCare website.

1 Kremer LC, et al. A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Pediatr Blood Cancer. 2013;60(4):543-9.

2 Armenian SH, 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.

3 Clemens E, et al. Recommendations for ototoxicity surveillance for childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCare Consortium. Lancet Oncol. 2019;20(1):e29-e41.

4 Clement SC, et al. Balancing the benefits and harms of thyroid cancer surveillance in survivors of Childhood, adolescent and young adult cancer: Recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCareSurFup Consortium. Cancer Treat Rev. 2018;63:28-39.

5 Mulder RL, et al. Recommendations for breast cancer surveillance for female survivors of childhood, adolescent, and young adult cancer given chest radiation: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Lancet Oncol. 2013;14(13):e621-9.

6 Skinner R, et al. Recommendations for gonadotoxicity surveillance in male childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCareSurFup Consortium. Lancet Oncol. 2017;18(2):e75-e90.

7 van Dorp W, et al. Recommendations for Premature Ovarian Insufficiency Surveillance for Female Survivors of Childhood, Aolescent, and Young Adult Cancer: A Report From the International Late Effects of Childhood Cancer Guideline Harmonization Group in Collaboration With the PanCareSurFup Consortium. J Clin Oncol. 2916;34(28):3440-50.

8 van Kalsbeek RJ, et al. European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer. Eur J Cancer. 2021;154:316-328.