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.

Providing Information About Late Effects During Routine Follow-Up Consultations Between Pediatric Oncologists and Adolescent Survivors: A Video-Based, Observational Study

“…19,20,40,41 Providing information that meets patients' needs is central in models of patient-centered care, 42 and a European initiative has been made-PanCare-to structure how long-term care after childhood cancer could be conducted. 43 A challenge for the POs is that AYA survivors may not want such information, especially when feeling healthy. 25,29 Additionally, AYA survivors may not have progressed from concrete to abstract thinking, making abstract information about future health risks difficult to appreciate.…”

The Role of Exercise in Pediatric and Adolescent Cancers: A Review of Assessments and Suggestions for Clinical Implementation

“…Central nervous system tumorigenesis starts in the lower parts of the brain, such as the cerebellum or brain stem, and may cause headaches, nausea, vomiting, blurred or double vision, dizziness, seizures, and trouble walking or handling objects. Spinal cord tumors are less common than brain tumors in both children and adults [2,52]. About 6% of childhood cancers are neuroblastomas, which can be found in a developing embryo or fetus.…”

“…The goal is no different in the pediatric population [52][53][54][55], but there are much fewer data available to draw conclusive and precise exercise guidelines. Therefore, the goal of this review is to examine pediatric cancers, associated cancer treatments, and late adverse events and review emerging knowledge on pediatric exercise oncology.…”

The SIOPE strategic plan: A European cancer plan for children and adolescents

“…Paediatric cancer is still a major public health issue, despite high survival rates compared to adult cancers  Each year there are 35,000 new cases of cancer in children and adolescents in Europe (15,000 in children below the age of 15 years and 20,000 in those aged [15][16][17][18][19][20][21][22][23][24].  1 out of 300 new-borns will develop cancer before turning 20.…”