Journal of Cancer Survivorship

, Volume 13, Issue 5, pp 759–772 | Cite as

Evidence-based recommendations for the organization of long-term follow-up care for childhood and adolescent cancer survivors: a report from the PanCareSurFup Guidelines Working Group

  • Gisela MichelEmail author
  • Renée L. Mulder
  • Helena J. H. van der Pal
  • Roderick Skinner
  • Edit Bárdi
  • Morven C. Brown
  • Janine Vetsch
  • Eva Frey
  • Rachael Windsor
  • Leontien C. M. Kremer
  • Gill Levitt



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.


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.


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.


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.


Evidence-based guideline Recommendations Follow-up care Oncology Survivor Child Adolescent 



This work was financially supported by the European Union’s Seventh Framework Programme for research, technological development, and demonstration under grant agreement no. 257505 (PanCareSurFup).

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

This article does not contain any studies with human participants performed by any of the authors.


The funding sources had no role in any parts of the study.

Supplementary material

11764_2019_795_MOESM1_ESM.docx (510 kb)
ESM 1 (DOCX 509 kb)
11764_2019_795_MOESM2_ESM.docx (168 kb)
ESM 2 (DOCX 168 kb)


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Authors and Affiliations

  • Gisela Michel
    • 1
    Email author
  • Renée L. Mulder
    • 2
  • Helena J. H. van der Pal
    • 2
  • Roderick Skinner
    • 3
    • 4
  • Edit Bárdi
    • 5
    • 6
  • Morven C. Brown
    • 7
  • Janine Vetsch
    • 1
    • 8
    • 9
  • Eva Frey
    • 5
  • Rachael Windsor
    • 10
  • Leontien C. M. Kremer
    • 2
    • 11
  • Gill Levitt
    • 12
  1. 1.Department of Health Sciences and Health PolicyUniversity of LucerneLucerneSwitzerland
  2. 2.Princess Máxima Center for Pediatric OncologyUtrechtThe Netherlands
  3. 3.Northern Institute for Cancer ResearchNewcastle UniversityNewcastle upon TyneUK
  4. 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 TrustNewcastle upon TyneUK
  5. 5.St Anna Children’s HospitalViennaAustria
  6. 6.Kepler UniversitätsklinikumLinzAustria
  7. 7.Institute of Health & SocietyNewcastle UniversityNewcastle upon TyneUK
  8. 8.School of Women’s and Children’s HealthUNSW SydneyKensingtonAustralia
  9. 9.Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s HospitalRandwickAustralia
  10. 10.Children and Young People’s Cancer ServiceUniversity College London Hospitals NHS Foundation TrustLondonUK
  11. 11.Emma Children’s Hospital, Amsterdam UMCUniversity of Amsterdam, Paediatric OncologyAmsterdamThe Netherlands
  12. 12.Department of Paediatric Oncology, Great Ormond Street Hospital for Children, NHS Foundation TrustLondonUK

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