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 IGHG and the PanCare Network, involving HCPs, researchers and survivors.22, 23, 24, 25, 26, 27, 28

In the context of the Care intervention delivered in the cohort study, 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) in the Care intervention; 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.19

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.19