Elsevier

European Journal of Cancer

Volume 154, September 2021, Pages 316-328
European Journal of Cancer

Original Research
European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer

https://doi.org/10.1016/j.ejca.2021.06.004Get rights and content
Under a Creative Commons license
open access

Highlights

  • Long-term follow-up care is important for survivors of childhood cancer.

  • Evidence-based guidelines to direct care are essential, but lacking for many topics.

  • We developed harmonised surveillance recommendations to bridge the gap.

  • Survivor representatives were involved in the formulation of recommendations.

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.

Keywords

Neoplasms
Cancer survivors
Survivorship
Aftercare
Practice guideline
Patient participation
Quality of life

Cited by (0)

1

These authors shared last authorship.