The problem: late effects of childhood, adolescent and young adult cancer treatment
At present, more than 80% of children, adolescents and young adults diagnosed with cancer survive beyond five years after diagnosis, and grow up to be adolescents and adults.
This expanding group of 300,000 survivors in Europe is expected to increase by 12,000 survivors each year.
Unfortunately, the treatment that has cured their disease (for example, chemotherapy, stem cell transplant, radiotherapy and/or surgery) may have many side effects. Some occur years to decades after treatment.
These so-called “late effects” can impact health, social and emotional well-being, or cognitive functioning of survivors. The burden of these late adverse events varies from survivor to survivor. In addition to affecting the daily lives of survivors and their families, these late effects also put a burden on society through increased healthcare consumption and social or educational support needs. The risk of late effects is largely dependent on the type of treatment that was given, the genetic and hereditary background, and lifestyle – but remains elevated during the entire course of life.
The solution: survivorship care to prevent, identify and treat late effects
The risk of late effects means it is important that survivors can access long-term follow-up care throughout their life span. Survivorship care is focused on education and prevention, surveillance of late effects in an early and treatable stage, and timely intervention, if needed. International evidence-based guidelines are already available for surveillance of many late effects. PanCare, the European network for survivorship care, has initiated several projects to improve survivorship care.
PanCareSurFup established a European network and database of 80,000 survivors to study second malignancies, cardiac disease and late mortality and developed a guideline on the organization of long-term follow-up care.
PanCareLIFE studied the impact of treatment on female fertility, hearing and quality of life and developed two guidelines for fertility preservation.
PanCareFollowUp is the current project, and consists of two cohort studies:
- a study of feasibility and outcomes of implementing person-centred survivorship care as usual care in four European countries (Belgium, Czech Republic, Italy and Sweden), and
- a feasibility study of a personalised eHealth lifestyle intervention to improve lifestyle behaviours (the Netherlands).
The aim is to improve and implement person-centred survivorship care across Europe.
How do I implement long-term follow-up care in my centre?
All survivors of childhood, adolescent and young adult cancer should have access to long-term follow-up care under the guidance of a cancer survivorship expert centre or cancer centre throughout their lifespan.¹ If you are interested in implementing long-term follow-up care in your centre, there are several options available to support you:
- Contact survivorship care experts involved in the PanCare network at firstname.lastname@example.org.
- Consider becoming involved in the PanCareFollowUp Care intervention study as a study centre – please contact us at email@example.com to discuss the possibilities to contribute to this European cohort study.
- Use the intervention materials that have been developed for PanCareFollowUp, including European harmonised surveillance recommendations, Survivor Questionnaire, Treatment Summary template and Survivor Care Plan template – please contact us at firstname.lastname@example.org if you would like to receive these materials for use in your long-term follow-up clinic without being a part of the study.
¹G Michel, RL Mulder, HJH van der Pal, R Skinner, E Bárdi, MC Brown, J Vetsch, E Frey, R Windsor, LCM Kremer, G Levitt. 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. Journal of Cancer Survivorship 2019;13(5):759-772.
How can I implement or improve survivorship care with PanCareFollowUp Care?
After publication of the intervention materials, they will be provided for use by other centres. Please contact us at email@example.com if you are interested in receiving and using these materials.
At the end of the study, a Replication Manual will be developed for use by any centre wishing to implement comprehensive, person-centred survivorship care based on the results of the PanCareFollowUp cohort study. It will include the PanCareFollowUp intervention materials, but also an overview of the results and a tailored implementation plan. Please contact us at firstname.lastname@example.org if you want to be updated on progress of the project and development of the Replication Manual.