Survivorship after childhood cancer: PanCare: A European Network to promote optimal long-term care

Abstract

Survival after childhood cancer has improved substantially over recent decades. Although cancer in childhood is rare increasingly effective treatments have led to a growing number of long-term survivors. It is estimated that there are between 300,000 and 500,000 childhood cancer survivors in Europe. Such good survival prospects raise important questions relating to late effects of treatment for cancer. Research has shown that the majority will suffer adverse health outcomes and premature mortality compared with the general population. While chronic health conditions are common among childhood cancer survivors, each specific type of late effect is very rare. Long-term effects must be considered particularly when addressing complex multimodality treatments, and taking into account the interaction between aspects of treatment and genotype. The PanCare Network was set up across Europe in order to effectively answer many of these questions and thereby improve the care and quality of life of survivors.

The need for a structured long-term follow-up system after childhood cancer has been recognised for some time and strategies for implementation have been developed, first nationally and then trans-nationally, across Europe. Since its first meeting in Lund in 2008, the goal of the PanCare Network has been to coordinate and implement these strategies to ensure that every European survivor of childhood and adolescent cancer receives optimal long‐term care. This paper will outline the structure and work of the PanCare Network, including the results of several European surveys, the start of two EU-funded projects and interactions with relevant stakeholders and related projects.

Introduction

Survival after childhood cancer has improved substantially over recent decades. Although cancer in childhood is rare increasingly effective treatments have led to a growing number of long term survivors. This improvement in survival means that one in 1000 individuals in the general population of developed countries is a survivor of childhood cancer [1]. Research has shown that a significant proportion will suffer adverse health outcomes including premature mortality compared with the general population. While chronic health conditions are common among childhood cancer survivors, each specific type of late effect is very rare. Over the last two decades there have been many studies addressing the risks of specific late effects in relation to aspects of previous anti-cancer treatment but they have been hampered by the ability to recruit adequate numbers of survivors. It is estimated that there are between 300,000 and 500,000 childhood cancer survivors in Europe [2]. Such good survival prospects raise important questions relating to late effects of treatment for cancer, particularly when addressing complex multimodality treatments, and taking into account the interaction between aspects of treatment and genotype. By forming a Network across Europe we may be able to effectively answer many of the questions and from the answers improve the holistic care of all survivors.

Childhood cancer survivors deserve an effective structured long-term follow-up system to maximise their quality of life. For many years national groups have been working on special guidelines and recommendations in long-term follow-up; strategies for implementation have been developed, first nationally and then trans-nationally, across Europe [3], [4], [5], [6], [7], [8]. This formed the basis for the networking and collaboration leading to the formation of PanCare in Europe. Since the first meeting in Lund, the goal of the PanCare Network has been to implement these strategies to ensure that every European survivor of childhood and adolescent cancer receives optimal long‐term care. This paper will outline the PanCare Network, our mission statement and the first step towards achieving our ambitions.